I decided to make this post so you all could share your stories of your journey with these autoimmune diseases. I honestly think that by sharing, it helps us in the day to day, knowing there are others that are dealing with the same issues. So, please share your story by commenting on this post. I think it will help our community bonding and each of us personally. Thanks! ~Jen
I am studying up on this segment of lupus and the nervous system involvement. I have found several interesting sources of information and thought it would be nice to share them with you.
The first one is is from the LFA’s website. Here is the information they have:
The Nervous System
Lupus is an autoimmune disease that can affect almost any part
of your body, including your joints, skin, kidneys, heart, lungs, or blood.
Lupus can also affect the nervous system and brain. There are several terms
doctors use to describe this: neuropsychiatric lupus (NP-SLE), neurocognitive
dysfunction, or central nervous system lupus (CNS lupus). Your nervous system
has three parts, any of which may be affected by lupus.
- The central nervous system (CNS) consists of the brain and the
- The peripheral nervous system (PNS) is a network of nerves that connects the
brain and spinal cord to the rest of the body, and gives skin and muscles the
signals needed for sensation and movement.
- The autonomic nervous system (ANS) allows communication between spinal and
peripheral nerves and the brain and internal organs, and controls functions like
breathing, blood flow, and heart rate.
People with lupus can experience a number of complications when
their nervous system is affected. The symptoms may come on suddenly or may come
and go, but they will vary depending upon the location and extent of the tissue
injury. These symptoms also can be present in other diseases, so diagnosing
lupus-related nervous system disorders is often difficult.
Neurologists are the physicians who specialize in the nervous
system. They may rely on a number of diagnostic tools to determine whether lupus
is involved in your cognitive problems:
- brain scans (magnetic resonance imaging (MRI) and computed tomography (CT)
- electroencephalograms (to capture the electrical pattern of brain activity)
- spinal tap (to examine fluid in the spinal column)
Behavioral and cognitive tests may also be done to find out if
your memory or other mental abilities have been affected.
Depending on the symptoms, a variety of medications are
available to treat lupus-related nervous system disorders, including
non-steroidal anti-inflammatory drugs, antimalarials, and steroids. Your
response to treatment may be rapid or gradual over several months. For many
people with lupus, nervous system involvement is completely
Central Nervous System (CNS)
When lupus affects your central nervous system, many symptoms
may occur, including:
- vision problems
- mood swings
- difficulty concentrating
Drugs used to treat lupus can cause side effects that are
similar to the symptoms of CNS lupus. If you have symptoms of CNS lupus you
should consult a neurologist who can determine which symptoms are side effects
of medication and which are due to lupus. The drugs most known for causing
symptoms like those of CNS lupus are:
- Non-steroidal anti-inflammatory drugs (NSAIDs) – may cause
headache, dizziness, confusion, and in rare instances, meningitis-like
- Antimalarials – in very high doses (not usually given for
lupus) may cause manic behavior, seizures, psychosis
- Corticosteroids – may cause agitation, confusion, mood swings,
- Anti-hypertensive medications – may cause depression or loss of
A serious form of lupus called CNS vasculitis may occur when
there is inflammation of the blood vessels of the brain. Characterized by high
fevers, seizures, psychosis, and meningitis-like stiffness of the neck, CNS
vasculitis is the most dangerous form of lupus involving the nervous system and
usually requires hospitalization and high doses of corticosteroids to suppress
Peripheral Nervous System (PNS)
The nerves of your peripheral nervous system control your motor
responses and sensation, so symptoms of numbness or tingling, or inability to
move a part of your body, may be the result of lupus affecting these nerves.
Known as peripheral neuropathies, symptoms of PNS nerve damage are caused by
inflammation of the nerves or by compression of the nerves due to swelling in
the tissue around them. The types of symptoms you might experience
- facial pain
- ringing in the ears
- drooping of an eyelid
- carpel tunnel syndrome
Autonomic Nervous System (ANS)
The autonomic nervous system regulates many of your body’s
functions that happen almost automatically: heart rate, blood pressure, feeling
hot or cold, bladder and bowel functions, release of adrenalin, breathing,
sweating, and muscle movement. Lupus can cause these nerve signals to be
overactive, which can lead to a wide range of symptoms:
- mental confusion
- gastrointestinal problems such as nausea, vomiting, constipation, or
Raynaud’s phenomenon is a condition of ANS involvement caused by
inflammation of nerves or blood vessels. Blood vessels in your hands and feet go
into spasm and restrict blood flow, usually as a reaction to cold temperatures,
with the tips of the fingers or toes turning red, white, or blue. Raynaud’s can
also cause pain, numbness, or tingling in fingers and/or toes. People who have
Raynaud’s phenomenon are advised to avoid cold conditions when possible, and may
have to wear gloves or mittens when in air-conditioned surroundings.
Livedo reticularis and palmar erythema are two other skin
disorders that may affect you if you have autonomic nerve damage. Both of these
conditions can cause a bluish, lacelike mottling under your skin, especially on
your legs, giving your skin a “fishnet” look.
As many as half of all people with lupus describe feelings of
confusion, fatigue, memory loss, and difficulty expressing their thoughts. This
collection of symptoms is termed cognitive dysfunction, although many people
call it “lupus fog.”
Cognitive dysfunction most often affects people with mild to
moderately active lupus. The causes of these symptoms, and the reasons that the
symptoms tend to come and go, are not known. Living with cognitive dysfunction
can be very frustrating. However, you can learn to improve your concentration
and lessen confusion and memory loss with a variety of coping skills, including
puzzles, games, biofeedback, using a daily appointment calendar, and balancing
daily activities to reduce stress.
Compared with the general population, people with lupus may be
twice as likely to experience migraine-like lupus headaches, commonly known as
lupus headaches. The features of lupus headaches are similar to migraines and
may be seen more often in people who also have Raynaud’s phenomenon. However,
headaches can also be caused by vasculitis, a symptom of active lupus due to
inflammation of the blood vessels. If you are experiencing headaches that are
not improved by an over-the-counter headache medication, be sure to tell your
I know several people who have this and so it seemed only natural to include an overview here. The name can be deceiving because it is not only associated with the legs. Please read so you can understand and learn more. It was an eye opening article for me. This information is from www.rls.org website. While this article is short, you can check into it more at the website and many others.
Restless Leg Syndrome
Restless legs syndrome (RLS) is a neurological condition that is characterized by the irresistible urge to move the legs. While the name may sound funny, it is a very real disorder. In order for you to be officially diagnosed with RLS, you must meet the criteria described in the four bullets below:
- You have a strong urge to move your legs which you may not be able to resist. The need to move is often accompanied by uncomfortable sensations. Some words used to describe these sensations include: creeping, itching, pulling, creepy-crawly, tugging, or gnawing.
- Your RLS symptoms start or become worse when you are resting. The longer you are resting, the greater the chance the symptoms will occur and the more severe they are likely to be.
- Your RLS symptoms get better when you move your legs. The relief can be complete or only partial but generally starts very soon after starting an activity. Relief persists as long as the motor activity continues.
- Your RLS symptoms are worse in the evening especially when you are lying down. Activities that bother you at night do not bother you during the day.
RLS can also cause difficulty in falling or staying asleep which can be one of the chief complaints of the syndrome. A substantial number of people who have RLS also have periodic limb movements of sleep (PLMS). These are jerks that occur every 20 to 30 seconds on and off throughout the night. This can cause partial awakenings that disrupt sleep. Sleep deprivation can seriously impact your work, relationships, and health.
Ok, so the title is a bit misleading. If you see me walking in the snow, odds are it is an emergency of some kind or not by choice. Winter is brutal this year for me. Most of the time, when the cold hits I feel it at least a little. Some days more than others. This winter is different in that every time I go out, I pay for at least a day or so. How? In pain, that awful joint pain that throbs and makes you wish you could just cut off the offending member. Ok, so that is a bit on the dramatic side, I admit, however it does hurt like the dickens and makes you a bit on the crazy side. One of the saying I use at times like this is, “I am a pain, when I am in pain”. Don’t say I did not warn you!
The reason for this title is that here where I live, we are expecting a major snowstorm beginning tonight and going through Monday. Blowing and drifting snow will make it hard to travel as well as the snowfall amounts. So basically, I am housebound. Oh, I have all the necessities of life here, don’t get me wrong. I just mean that I cannot go out into the snow.
You see, I have osteoporosis in my spine from the steroids usage for the lupus. Yes, pick your poison, do you want to live, albeit with fragile bones, or just wing it and hope for the best? Well, I went with the steroids and they really do help. They also really have serious side effects, like osteoporosis among others. That means when it gets slippery outside, I stay inside. I like my hips and spine just the way they are thank you. One slip and fall and I could be laid up for a long time!
So, when you are out and about in the winter wonderland, remember to enjoy it. There are those of us who would love to be out there and having snowball fights, making snow angels and such but we know our own fragilities and watch from the windows. We do not want pity. We just want understanding and empathy. It is not easy being different and watching others have fun. The alternative though, is the possible fracturing of bones and more pain. We want to survive to see another snowfall, watch another grandchild grow, and feel alive. In the future, please be more respectful of us. We do not want to be different, we just are.
Many of you who see this will think, what do these two have in common? The truth is, quite a lot. I personally have been on chemotherapy several times due to my lupus. Many of my lupie friends have as well. It is not well known to those outside of the lupus world though.
You see, lupus is an autoimmune disease, which means, that our bodies create antibodies against our own body and its cells. In effect, our body attacks itself. Antibodies are great when you are sick and need to fight an infection. When they go into hyper mode, you are now into the realm of autoimmune diseases.
Where does the chemotherapy come in, you ask? In an effort to slow down the autoimmune disease from being in hyper mode, we are given chemotherapy agents to shut it down, or at least attempt to take it down to a more normal level. Sometimes it works, sometimes it goes too far. It is a fine line on therapeutic effect and overkill.
I actually was on chemotherapy when I was “let go” from my last job. I had been told that my job would still be there while I was out on paid sick leave. The truth is, they fired me by email. They gathered my things up and federal expressed them to me too. How lovely. Ok, sorry, I am digressing into the land of the past and I need to let it go.
This information is from the Lupus Foundation of America website about chemotherapy:
“chemotherapy, is generally reserved for those individuals who have the most severe flares of lupus; or to enable the steroid dose to be reduced. A severe flare is one that affects an organ to the degree that the function is impaired. When this happens something has to be done to preserve the function of the organ and that’s when immunosuppressive or chemotherapy medications are prescribed. These actually suppress the over activity of the immune system brought on by the lupus, and help limit the damage and preserve the function of the involved organ. (Lupus is NOT a form of cancer).”
There are many types of chemotherapy agents used in treating lupus. I have looked them up and here are a few of them (from the Lupus Foundation of America website):
Imuran, Cytoxan And Related Drugs
Although immunosuppressive drugs can have serious side effects, they can be of great value in the treatment of systemic lupus erythematosus (SLE). They may help to:
- prolong life
- preserve kidney function
- reduce disease symptoms
- reduce damage to vital organs, such as the kidneys and lungs.
- sometimes even serve to put the disease into remission.
Steroids used alone to treat major organ involvement in lupus must sometimes be given in high doses. This increases the risk of short-term and long-term side effects, which may sometimes be worse than the disease itself. Immunosuppressive drugs can be used either in addition to, or instead of, steroids to spare the patient some of the undesirable side effects of steroid therapy.
Thus, immunosuppressive and cytotoxic drugs are used in the treatment of lupus for two major reasons:
- They are potent drugs which help to control disease activity in major organs, including the kidney, brain, cardiovascular system, and lungs.
- They may reduce or eliminate the need for steroids (cortisone derivatives such as prednisone).
How Do They Work?
Cells in the body divide and grow at varying rates. Examples of rapidly dividing cells include:
Cytotoxic (cyto=cell, toxic=damage) drugs work by targeting these cells which grow at a rapid rate. In lupus, the immune system produces autoantibodies at a rapid rate of growth. Cytotoxic medicines can suppress the cells involved in the hyperactive immune response.
There are risks associated with the use of cytotoxic drugs.
- The immune system may be suppressed too much, which causes an increased susceptibility to infection, particularly shingles (a painful, blistering skin condition) and pneumonia.
- The bone marrow can be suppressed as well, which results in reductions in red blood cells, white blood cells, or clot-forming platelets.
- Suppression of hair cell growth may lead to overall loss of hair.
- The cytotoxic effects on gonadal cells can lead to sterility.
Imuran (generic name: azathioprine)
Imuran is less potent and less effective than Cytoxan, but has fewer side effects. Imuran is well tolerated in most cases. Imuran is steroid-sparing and studies have shown that it clearly improves liver and kidney lupus.
Side effects can include:
- decreases in white blood cell count, platelet count, or red blood cell count
- increased risk of developing lymphoma (cancer involving the lymph glands, liver and spleen), with long-term Imuran use
Blood tests to determine the white blood cell, platelet, and red blood cell count should be done regularly in patients receiving this drug. Adjustments in dosage are made if the tests indicate a serious decrease in blood counts.
Cytoxan (generic name: cyclophosphamide)
Cytoxan is well tolerated by most patients. Like Imuran, it may cause an upset stomach, and its use may decrease the white blood cell count, platelet count, or red blood cell count
Side effects can include:
- an increased risk of developing malignancies, including leukemia and bladder cancer, with long-term Cytoxan use
- temporary or permanent sterility in both women and men, preventing them from having children
- leading to damage of a developing fetus if a woman gets pregnant while being treated with the drug
- bleeding from the bladder-this usually can be prevented by drinking large amounts of water
- causing a predisposition to develop shingles
- hair loss
- like Imuran, causing a predisposition to develop unusual infections, particularly when given in combination with high doses of steroids
Blood tests to determine these blood counts should be done regularly for those receiving Cytoxan. If the blood count is seriously decreased, the dosage is adjusted and the blood counts will generally return toward normal.
How Is Cytoxan Administered?
Cytoxan can be given as oral tablets, but more often is given through the vein (intravenously, or IV).
- This procedure generally takes between 15 and 60 minutes.
- Large amounts of intravenous fluids are also given to dilute the concentration of Cytoxan in the bladder.
- Pre-medication for nausea is sometimes given, but treatment with Cytoxan is generally well tolerated.
- IV Cytoxan seems to be associated with fewer malignancies and many fewer bladder problems, while being equally effective.
- Controlled studies also show that it improves kidney and autoimmune lung disease.
Leukeran (generic name: chlorambucil) and Mustargen (generic name: nitrogen mustard)
- These two cytotoxic drugs are related to cyclophosphamide.
- Both have similar side effects to Cytoxan.
This drug is usually given orally on a weekly basis, although it may be given by injection.
- The dosage is generally 7.5 to 25 milligrams per week.
- Methotrexate is well tolerated by most patients.
- Its use in lupus has not been thoroughly tested, but it is given commonly for rheumatoid arthritis and has been shown to produce improvement of joint pain and stiffness.
- It is only modestly effective for organ-threatening lupus.
- Liver disease and lung reactions can occasionally occur with the use of methotrexate.
- Blood counts and blood liver enzyme tests should be monitored regularly in patients receiving this drug, and the dosage modified if side effects are detected.
CellCept (generic name: mycophenolate mofetil) and Neoral (generic name: cyclosporine)
- These two medications modify the immune system, which, in lupus, appears to be both overactive and misdirected.
- Both of these medications are used to prevent rejection of the donated organ in kidney, liver, heart and lung transplants.
- CellCept can cause nausea and diarrhea.
- Cyclosporin may elevate blood pressure and reduce kidney function.
All of these agents are steroid-sparing. While cytotoxic medications should not be used in cases of mild lupus, these medications can be very helpful and even life-saving when major organs are involved, or in cases where the lupus is quite active and symptomatic.
Sometimes a kidney biopsy or other tissue biopsy is necessary before deciding whether to use these drugs. Even in more serious cases of major organ involvement, cytotoxic drugs should not be used indefinitely without good reason.
It is important to weigh the beneficial effects as well as the risks involved in cytotoxic drug therapy. Doctors use the term “risk-benefit ratio” to describe the comparison of side effects to beneficial effects of medication. While these cytotoxic drugs are not FDA-approved for use in SLE, they are commonly used and accepted as standard practice. People with lupus should discuss the risk-benefit ratio of these medications with their physician.
I bet you thought this would be about the holidays. Well, no, it is about winter.
This is that time of the year where the nights are longer, the air is colder, and we are indoors more. It is also that time of the year when many infectious viruses and bacteria are shared with others as we are indoors and have close contact with each other.
When I was in nursing school, my microbiology professor called this time of year, “a microbiotic soup of those infected and those susceptible”. In short, we are in closed spaces, and around more people and are more prone to the touching of places where some who are sick have touched, walking by someone who is sneezing or coughing and inhaling the germs, or being around a child who may have been exposed to germs at school. Hence the microbiotic soup analogy.
Those of us with lupus have to be more vigilant than most. You see, most of our medications are considered immunosuppressants and can leave us more vulnerable because of our immune systems being lowered. At this point, you may think, “Go get a flu shot”. I must state here that the jury is out in regards to lupus patients and flu shots. Many lupus patients are recommended by their doctors to get flu shots each year. They get them and all is good. Some others are advised by their doctors NOT to get the flu shots. My doctor is one of those who has told me not to get a flu shot.
Some have noticed that lupus patients seem to go into a flare when they get flu shots, others say the opposite. Like I said, the jury is out and since I am no doctor, I say talk to your doctor and follow their advice. It may be that your medications can play a role in whether you should get one or not. The type of lupus may be another reason. In the end, it is best to listen to those who are more qualified and know what the risks versus the benefits are.
Another thing about this time of the year is the colder air and the cold fronts which come through bringing the drop in barometric pressure and to some of us lupies, pain. For some reason, the cold weather makes our joints hurt. I know I experience this. I almost hibernate this time of the year because of it.
Now on a personal note, and in an effort to be honest here, I have found myself not only flaring and in pain, but while out and about (I went to the grocery), I seem to have picked up a nasty cold bug. I am using my neti pot and keeping to comfort foods while resting up and fighting it. Sometimes, when it rains, it pours. Ah well, such is the life of a lupie patient.
The best news of the week is that the FDA committee approved sending Benlysta for final approval for lupie patients. The date it will go in front of the FDA is December 5th. It is imperative that this drug get approved. I am on the clinical trial of this and I inject a dose once every two weeks subcutaneously. The study I am in is different than what is hopefully being approved. The FDA is approving Benlysta for IV infusion for lupus patients. The study I am in is to see the effectiveness of injecting instead of infusing. So, we will hope that it gets approved so many of us can feel better instead of worse this time of the year.
I hope all of you have pain free days and restful nights this winter. Remember to watch out for the bugs which can infect us this time of the year.
Ok, this is one of my personal posts. The last seven days have been an exercise in fluctuating emotions and symptoms. I have had good days and bad days. The good ones I accomplished much. The bad days were spent in bed, in pain, and severe fatigue. I have noticed the pain is getting progressively worse. It is a scary feeling, entering into painful waters on this journey of the wolf.
I have got an appointment at the pain clinic but I have to wait until December. I will update when the time comes. I am also waiting for the results of my tests from the neurologist. I am taking the path that no news is good news. I am not sure how much I can deal with right now.
On my good days, I have done much housework and other chores that wait for my good days. I closed the trailer up for the winter, with the help of my son. I also washed the dishes. We do not have a dishwasher, unless you can say it is me. It is amazing how the dishes stack up and wait for me to do them.
So, that is that. I am getting really upset about trying to feel better when my body will not cooperate. In my head, I am fit and able to do much. In my body, I am like an eighty year old who can only do so much and must take naps. Who knows what tomorrow brings? I am keeping cautiously optimistic that it will be wonderful tomorrow! Thanks for listening to the boring moan from me. Have a great day and hope it is pain free!
Today was a very busy day indeed. My mother-in-law officially worked her last day yesterday in preparation for her move to Kentucky. Wal-Mart gave her a big cake, a beautiful bouquet of calalillies, a candle and a picture frame. She was surprised at the gifts for sure.
Today, our congregation gave her a farewell party. She has been in this congregation for some 49 years now so it was a pretty big deal! The food was outstanding, and lovingly made by so many of the congregation. There was a “jeopardy” type game with questions a bout my mother-in-law as well and a good time was had by all! Many of the friends brought gifts and cards. It was so precious to see how they will miss her when she moves.
Her move is truly a big one for her. You see, she has lived her whole life in our hometown. She has worked locally at several jobs but retired from them all now. She is 74. She was widowed in late 40′s. She grew up a few streets away from her current home so in essence, she only moved a few blocks in her lifetime. Now she is packing her belongings and moving 3 hours away to a brand new apartment that my sister and brother-in-law have built for her above their home. This is a big deal!
We have lived with her for some three years now so her leaving will be difficult for us as well. We now have her home and are making it ours. We are painting and bringing the house up to date. It is an adventure for us as well as her.
On to wolfie… I made it through this busy day and am sitting in the living room typing this and trying to keep my eyes open long enough to do it. I laughed so much my cheeks hurt. It was wonderful to be surrounded by so many of Christ‘s followers who exhibit love in such an unselfish way. It is beautiful to see that love extended to those around them as well. She is leaving a very special congregation for sure, but she is moving to another one that will keep her busy and happy as well.
Life can take such sweet twists and turns and shake things up a bit but deep down, as long as we are able, we should always be Christ like in our love for others in both word and deed. While sitting here in pain, it is nonetheless heartwarming to feel that special bond with others who believe as you do. Her new congregation is wonderful too. I lived dwon there and was a member for a time (while we lived there). It is filled with many others who are genuine, trust worthy and God fearing. A blessing indeed for her. They were for me and I miss them so but I am also surrounded here with the same love in the congregation I attend. Blessings from God, His congregations are a source of love, knowledge, wisdom and truth. Blessings to you all!
Behcets Disease is another of the autoimmune diseases family. Please read and become more informed. This information is from the website www.behcets.com.
Behçet’s disease is common in the Middle East, Asia, and Japan. It is rare in the United States. In Middle Eastern and Asian countries, the disease affects more men than women. In the United States, it affects more women than men. Behçet’s disease tends to develop in people in their 20′s or 30′s, but people of all ages can develop this disease. Behçet’s disease is an autoimmune disease that results from damage to blood vessels throughout the body, particularly veins. In an autoimmune disease, the immune system attacks and harms the bodies’ own tissues. The exact cause of Behçet’s disease is unknown. Most symptoms of the disease are caused by vasculitis (an inflammation of the blood vessels). Inflammation is a characteristic reaction of the body to injury or disease and is marked by four signs: swelling, redness, heat, and pain. Doctors think that an autoimmune reaction may cause the blood vessels to become inflamed, but they do not know what triggers this reaction. Under normal conditions, the immune system protects the body from diseases and infections by killing harmful “foreign” substances, such as germs, that enter the body. In an autoimmune reaction, the immune system mistakenly attacks and harms the body’s own tissues. Behçet’s disease is not contagious; it is not spread from one person to another. Behçet’s disease affects each person differently. The four most common symptoms (as listed) are mouth sores, genital sores, inflammation inside of the eye, and skin problems. Inflammation inside of the eye (uveitis, retinitis, and iritis) occurs in more that half of those with Behçet’s disease and can cause blurred vision, pain, and redness. Other symptoms may include arthritis, blood clots, and inflammation in the central nervous system and digestive organs.
Behcet’s disease has the ability to involve blood vessels of nearly all sizes and types, ranging from small arteries to large ones, and involving veins as well as arteries. Because of the diversity of blood vessels it affects, manifestations of Behcet’s may occur at many sites throughout the body. However, the disease does seem to target certain organs and tissues; these are described below:
Behcet’s may cause either anterior uveitis (inflammation in the front of the eye) or posterior uveitis (inflammation in the back of the eye), and sometimes causes both at the same time.
Anterior uveitis results in pain, blurry vision, light sensitivity, tearing, or redness of the eye.
Posterior uveitis may be more dangerous and vision–threatening because it often causes fewer symptoms while damaging a crucial part of the eye — the retina.
Painful sores in the mouth called “aphthous ulcers” (known as oral aphthosis [af-THO-sis] and aphthous stomatitis) affect almost all patients with Behçet’s disease. Individual sores or ulcers are usually identical to canker sores, which are common in many people. These sores are usually a result of minor trauma. They are often the first symptom that a person notices and may occur long before any other symptoms appear. However, the lesions are more numerous, more frequent, and often larger and more painful. Aphthous ulcers can be found on the lips, tongue, and inside of the cheek. Aphthous ulcers may occur singly or in clusters, but occur in virtually all patients with Behcet’s. The sores usually have a red border and several may appear at the same time. They may be painful and can make eating difficult. Mouth sores go away in 10 to 14 days but often come back. Small sores usually heal without scarring, but larger sores may scar.
Skin problems are a common symptom of Behçet’s disease. Skin sores often look red or resemble pus-filled bumps or a bruise. The sores are red and raised, and typically appear on the legs and on the upper torso. In some people, sores or lesions may appear when the skin is scratched or pricked. When doctors suspect that a person has Behçet’s disease, they may perform a pathergy test, in which they prick the skin with a small needle; 1 to 2 days after the test, people with Behçet’s disease may develop a red bump where the doctor pricked the skin. However, only half of the Behçet’s patients in Middle Eastern countries and Japan have this reaction. It is less commonly observed in patients from the United States, but if this reaction occurs, then Behçet’s disease is likely.
Pustular skin lesions that resemble acne, but can occur nearly anywhere on the body. This rash is sometimes called “folliculitis”.
Skin lesions called erythema nodosum: red, tender nodules that usually occur on the legs and ankles but also appear sometimes on the face, neck, or arms. Unlike erythema nodosum associated with other diseases (which heal without scars), the lesions of Behcet’s disease frequently ulcerate.
Arthritis or “arthralgias” which is inflammation of the joints, occurs in more than half of all patients with Behçet’s disease. Arthritis causes pain, swelling, and stiffness in the joints, especially in the knees, ankles, wrists, and elbows. Arthritis that results from Behçet’s disease usually lasts a few weeks and does not cause permanent damage to the joints.
Behçet’s disease affects the central nervous system in about 23 percent of all patients with the disease in the United States. The central nervous system includes the brain and spinal cord. Its function is to process information and coordinate thinking, behavior, sensation, and movement. Behçet’s disease can cause inflammation of the brain and the thin membrane that covers and protects the brain and spinal cord. This condition is called meningoencephalitis. People with meningoencephalitis may have fever, headache, stiff neck, and difficulty coordinating movement, and should report any of these symptoms to their doctor immediately. If this condition is left untreated, a stroke (blockage or rupture of blood vessels in the brain) can result.
Central nervous system involvement is one of the most dangerous manifestations of Behcet’s. The disease tends to involve the “white matter” portion of the brain and brainstem, and may lead to headaches, confusion, strokes, personality changes, and (rarely) dementia. Behcet’s may also involve the protective layers around the brain (the meninges), leading to meningitis. Because the meningitis of Behcet’s disease is not associated with any known infection, it is often referred to as “aseptic” meningitis.
Genital sores affect more than half of all people with Behçet’s disease. The sores look similar to the mouth sores and may be painful. After several outbreaks, they may cause scarring.
Male — painful genital lesions that form on the scrotum, similar to oral lesions, but deeper.
Female — painful genital ulcers that develop on the vulva.
Behçet’s disease causes inflammation and ulceration (sores) throughout the digestive tract that are identical to the aphthous lesions in the mouth and genital area.
Ulcerations may occur anywhere in the gastrointestinal tract from the mouth to the anus. This leads to abdominal pain, diarrhea, and/or bleeding. Because these symptoms are very similar to symptoms of other diseases of the digestive tract, such as ulcerative colitis and Crohn’s disease, careful evaluation is essential to rule out these other diseases.
Above is a colonoscopy of a Behcet’s Disease Patient – showing ulcers.
Diagnosing Behçet’s disease is very difficult because no specific test confirms it. When a patient reports symptoms, the doctor must examine the patient and rule out other conditions with similar symptoms. Because it may take several months or even years for all the common symptoms to appear, the diagnosis may not be made for a long time and is often a retrospective diagnosis. A patient may even visit several different kinds of doctors before the diagnosis is made.
Criteria for Behçet’s disease:
- Mouth sores (oral ulcers) at least three times in 12 months
- Any two of the following:
- Recurring genital sores/ulcers
- Eye inflammation with loss of vision
- Characteristic skin lesions
- Positive pathergy (skin prick test)
Besides finding these signs, the doctor must rule out other conditions with similar symptoms, such as Lupus, Crohn’s disease, and Rheumatoid Arthritis. The doctor also may recommend that the patient see an ophthalmologist to identify possible complications related to eye inflammation. A dermatologist may perform a biopsy of mouth, genital, or skin lesions to help distinguish Behçet’s from other disorders.
There is no specific “Behçet’s’test”. Consequently, the diagnosis is based on the occurrence of symptoms and signs that are compatible with the disease, the presence of certain features that are particularly characteristic (e.g., oral or genital ulcerations), elimination of other possible causes of the patient’s presentation, and – whenever possible – proof of vasculitis by biopsy of an involved organ.
International Study Group for Behçet’s Disease
An international group of physicians has established a set of guidelines to aid in the classification of Behçet’s patients. This study group created the criteria for the purpose of conducting research on the disease. The criteria put forth by the study group include:
In addition, a patient must also meet two of the following:
recurrent genital ulcerations
eye lesions (uveitis or retinal vasculitis) observed by an opthalmologist
skin lesions (erythema nodosum, pseudofolliculitis, papulopustular lesions, acneiform nodules) adult patients not on corticosteroids
positive “pathergy test” read by a physician within 24-48 hours of testing
* It is important to note that the criteria set forth by the International Study Group of Physicians was intended for classification of patients for research only, not for a Behçet’s diagnosis.
The pathergy test is a simple test in which the forearm is pricked with a small, sterile needle. Occurrence of a small red bump or pustule at the site of needle insertion, 1 to 2 days after the test, constitutes a positive test. Although a positive pathergy test is helpful in the diagnosis of Behçet’s disease, only a minority of Behçet’s patients demonstrate the pathergy phenomenon (i.e., have positive tests). Patients from the Mediterranean region are more likely to demonstrate a positive response to a pathergy test. However, only 50% of patients in Middle Eastern countries and Japan have this reaction. This reaction is even less common in the United States. In addition, other conditions can occasionally result in positive pathergy tests, so the test is not 100% specific.
Pictured below is an example of the pathergy test: 1) taken at the time when the patient was “stuck” with the sterile needle; 2) the area immediately after the stick; 3) & 4) show the area one day and two days after the needle stick, respectively.
After the Diagnosis
Most people with Behçet’s disease can lead productive lives and control symptoms with proper medication, rest, and exercise. There are many medicines available to doctors to use to relieve pain, treat symptoms, and prevent complications. When treatment is effective, flares usually become less frequent. Many patients eventually enter a period of remission (a disappearance of symptoms). Sometimes, treatment does not relieve symptoms, and gradually more serious symptoms such as eye disease may occur. Serious symptoms may appear months or years after the first signs of Behçet’s disease occur.
Researchers are exploring possible genetic, bacterial, and viral causes of Behçet’s disease as well as improved drug treatment. Researchers are also investigating factors in the environment, such as bacterial or viral factors, that may trigger Behçet’s disease. In addition, researchers are identifying other medicines to better treat Behçet’s disease.
TREATMENTS FOR BEHÇET’S DISEASE
There is no cure for Behçet’s disease. Treatment typically focuses on reducing discomfort and preventing serious complications. Corticosteroids and other medications that suppress the immune system may be prescribed to treat inflammation. Behçet’s is a chronic disease that recurs. However, patients may have periods of time when symptoms go away temporarily (remission). The severity of the disease varies from patient to patient. Some patients may live somewhat normal lives, but others may become blind or severely disabled.
Behçet’s disease affects different parts of the body, therefore, a patient probably will see several different doctors. It may be helpful to both the doctors and the patient for one doctor to manage the complete treatment plan. This doctor can coordinate the treatments and monitor any side effects from the various medications that the patient takes.
A rheumatologist (a doctor specializing in arthritis and other inflammatory disorders) often manages a patient’s treatment and treats joint disease. The following specialists also treat other symptoms that affect the different body systems:
- Gynecologist-treats genital sores in women
- Urologist-treats genital sores in men
- Dermatologist-treats genital sores in men and women, and skin and mucous membrane problems
- Ophthalmologist-treats eye inflammation
- Gastroenterologist-treats digestive tract symptoms
- Hematologist-treats disorders of the blood
- Neurologist-treats central nervous system symptoms
Although there is no cure for Behçet’s disease, people usually can control symptoms with proper medication, rest, exercise, and a healthy lifestyle. The goal of treatment is to reduce discomfort and prevent serious complications such as disability from arthritis or blindness. The type of medicine and the length of treatment depend on the person’s symptoms and their severity.It is likely that a combination of treatments will be needed to relieve specific symptoms. Patients should tell each of their doctors about all of the medicines they are taking so that the doctors can coordinate treatment.
Topical medicine is applied directly on the sores to relieve pain and discomfort. For example, doctors prescribe rinses, gels, or ointments. Creams are used to treat skin and genital sores. The medicine usually contains corticosteroids (which reduce inflammation), other anti-inflammatory drugs, or an anesthetic, which relieves pain.
Doctors also prescribe medicines taken by mouth to reduce inflammation throughout the body, suppress the overactive immune system, and relieve symptoms. Doctors may prescribe one or more of the medicines described below to treat the various symptoms of Behçet’s disease. The treatment of Behçet’s syndrome depends on the severity and the location of its manifestations in an individual patient.
Steroid (cortisone) gels, pastes (such as Kenalog in Orabase) and creams can be helpful for the mouth and genital ulcers. Colchicine can also minimize recurrent ulcerations. Mouth and genital ulcers healed and were reported at a national meeting of the American College of Rheumatology as less frequent in 9 or 12 patients who were treated with Trental (pentoxifylline). Trental also seemed to maintain the healed ulcers for up to the 29 months of the study. The effectiveness of Trental, the researchers said, seemed to be enhanced by the combination with colchicine in some patients.
Joint inflammation can require non-steroidal anti-inflammatory drugs (such as ibuprofen and others) or oral steroids. Colchicine and oral and injectable cortisone are used for inflammation involving the joints, eyes, skin, and brain. Sulfasalazine has been effective in some patients for arthritis.
- Corticosteroids – Prednisone is a corticosteroid prescribed to reduce pain and inflammation throughout the body for people with severe joint pain, skin sores, eye disease, or central nervous system symptoms. Patients must carefully follow the doctor’s instructions about when to take prednisone and how much to take. It also is important not to stop taking the medicine suddenly, because the medicine alters the body’s production of the natural corticosteroid hormones. Long-term use of prednisone can have side effects such as osteoporosis (a disease that leads to bone fragility), weight gain, delayed wound healing, persistent heartburn, and elevated blood pressure. However, these side effects are rare when prednisone is taken at low doses for a short time. It is important that patients see their doctor regularly to monitor possible side effects. Corticosteroids are useful in early stages of disease and for acute severe flares. They are of limited use for long-term management of central nervous system and serious eye complications.
- Immunosuppressive drugs - These medicines (in addition to corticosteriods) help control an overactive immune system, which occurs in Behçet’s disease, and reduce inflammation throughout the body, and can lessen the number of disease flares. Doctors may use immunosuppressive drugs when a person has eye disease or central nervous system involvement. These medicines are very strong and can have serious side effects. Patients must see their doctor regularly for blood tests to detect and monitor side effects.
Doctors may use one or more of the following drugs depending on the person’s specific symptoms.
- Azathioprine (Imuran) - classified as an immunosuppressant medication. Azathioprine is used to suppress the immune system in patients who have had kidney transplants. Although its exact mechanism of action in rheumatoid arthritis is not known, its effect in suppressing the immune system appears to decrease the activity of this illness. Most commonly prescribed for people with organ transplants because it suppresses the immune system, azathioprine is now used for people with Behçet’s disease to treat uveitis and other uncontrolled disease manifestations. This medicine can upset the stomach and may reduce production of new blood cells by the bone marrow.
- Chlorambucil - Doctors may use these drugs to treat uveitis and meningoencephalitis. People taking either agent must see their doctor frequently because either can have serious side effects, such as permanent sterility and cancers of the blood. Patients have regular blood tests to monitor blood counts of white cells and platelets.
- Colchicine - Commonly used to treat gout, which is a form of arthritis, colchicine reduces inflammation throughout the body. The medicine sometimes is used to treat arthritis, mucous membrane, and skin symptoms in patients with Behçet’s disease. A research study in Turkey suggested that the medication works best for males with the disorder. Common side effects of colchicine include nausea, vomiting, and diarrhea. The doctor can decrease the dose to relieve these side effects.
- Cyclophosphamide - drug that is used primarily for treating several types of cancer. In order to work, cyclophosphamide first is converted by the liver into two chemicals, acrolein and phosphoramide. Acrolein and phosphoramide are the active compounds, and they slow the growth of cancer cells by interfering with the actions of deoxyribonucleic acid (DNA) within the cancerous cells. It is, therefore, referred to as a cytotoxic drug. Unfortunately, normal cells also are affected, and this results in serious side effects. Cytoxan also suppresses the immune system and is also referred to as immunosuppressive.
- Cyclosporine - Like azathioprine, doctors prescribe this medicine for people with organ transplants. When used by patients with Behçet’s disease, cyclosporine reduces uveitis and uncontrolled disease in other organs. To reduce the risk of side effects, such as kidney and liver disease, the doctor can adjust the dose. Patients must tell their doctor if they take any other medicines, because some medicines affect the way the body uses cyclosporine.
- Enbrel (Etanetcept) - Etanercept is an injectable drug that blocks tumor necrosis factor alpha (TNF alpha) and is used for treating rheumatoid arthritis, ankylosing spondylitis, and psoriatic arthritis. TNF alpha is a protein that the body produces during the inflammatory response, the body’s reaction to injury. TNF alpha promotes the inflammation and its associated fever and signs (pain, tenderness, and swelling) in several inflammatory conditions including rheumatoid arthritis and ankylosing spondylitis. Etanercept is a synthetic (man-made) protein that binds to TNF alpha. It thereby acts like a sponge to remove most of the TNF alpha molecules from the joints and blood. This prevents TNF alpha from promoting inflammation and the fever, pain, tenderness and swelling of joints in patients with rheumatoid or psoriatic arthritis and ankylosing spondylitis. Etanercept reduces the signs and symptoms of rheumatoid arthritis, the arthritis of psoriasis, and ankylosing spondylitis. It prevents the progressive destruction of the joints in patients with rheumatoid arthritis and the arthritis of psoriasis.
- Interferon - are multiple substances naturally produced by cells in the body to help fight infections and tumors. They may also be synthetic (man-made) versions of these substances. Alpha interferons, such as Roferon-A, Intron-A, and Alferon-N, are used to treat hairy cell leukemia, malignant melanoma, and AIDS-related Kaposi’s sarcoma. They are also used to treat laryngeal papillomatosis (growths in the respiratory tract) in children, genital warts, and some kinds of hepatitis. Gamma interferon, like Actimmune, is a synthetic (man-made) version of a substance naturally produced by cells in the body to help fight infections and tumors. Gamma interferon is used to treat chronic granulomatous disease and osteopetrosis. Interferon beta-1a, like Avonex and Rebif, is used to treat the relapsing forms of multiple sclerosis (MS) and genital warts. This medicine will not cure MS, but it may slow some disabling effects and decrease the number of relapses of the disease. Interferon beta-1b, such as Betaseron, is also used to treat the relapsing-remitting form of multiple sclerosis (MS). Again, this medicine will not cure MS, but may decrease the number of relapses of the disease. There are no generic forms of Interferon available.
- Kenalog (Triamcinolone) – a topical steroid. It reduces or inhibits the actions of chemicals in the body that cause inflammation, redness, and swelling. It is used to treat the inflammation caused by a number of conditions such as allergic reactions, eczema, and psoriasis.
- Methotrexate - Methotrexate is classified as an antimetabolite drug, which means it is capable of blocking the metabolism of cells. It has been found very helpful in treating rheumatoid arthritis. It seems to work, in part by altering aspects of immune function which may play a role in causing rheumatoid arthritis.
- Prednisone - is an oral, synthetic (man-made) corticosteroid used for suppressing the immune system and inflammation. It has effects similar to other corticosteroids such as triamcinolone (Kenacort), methylprednisolone (Medrol), prednisolone (Prelone) and dexamethasone (Decadron). These synthetic corticosteroids mimic the action of cortisol (hydrocortisone), the naturally-occurring corticosteroid produced in the body by the adrenal glands. Corticosteroids have many effects on the body, but they most often are used for their potent anti-inflammatory effects, particularly in those conditions in which the immune system plays an important role. Such conditions include arthritis, colitis, asthma, bronchitis, certain skin rashes, and allergic or inflammatory conditions of the nose and eyes. Prednisone is inactive in the body and, in order to be effective, first must be converted to prednisolone by enzymes in the liver. Therefore, prednisone may not work as effectively in people with liver disease whose ability to convert prednisone to prednisolone is impaired.
- Remicade (Infliximab) - Infliximab is an injectable antibody that blocks the effects of tumor necrosis factor alpha (TNF-alpha). By blocking the action of TNF-alpha, infliximab reduces the signs and symptoms of inflammation. This medication is administered via an IV-infusion.
- Sulfasalazine – a prodrug, that is, it is not active in its ingested form. It is broken down by bacteria in the colon into two products: 5-aminosalicylic acid (5ASA), and sulfapyridine. There is some controversy as to which of these two products are responsible for the activity of azulfidine. Whereas it is known that 5ASA has therapeutic benefit, it is not clear whether sulfapyridine adds any further benefit. In the colon, the products created by the breakdown of sulfasalazine work as anti-inflammatory agents for treating inflammation of the colon. The beneficial effect of sulfasalazine is believed to be due to a local effect on the bowel, although there may also be a beneficial systemic immune-suppressant effect as well. Following oral administration, 33% of the sulfasalazine is absorbed, all of the sulfapyridine is absorbed, and about 33% of the 5ASA is absorbed. Sulfasalazine was approved by the FDA in 1950.
- CellCept – contains the active ingredient mycophenolate mofetil. Cellcept belongs to a group of medicines called immunosuppressants. Immunosuppressants are used to prevent rejection of transplanted organs, and work by stopping your immune system from reacting to the transplanted organ. Cellcept may be used together with other medicines known as cyclosporin and corticosteroids.
- Thalidomide – Thalidomide is an oral medication used for treating the skin conditions of leprosy, a disease caused by a parasite, Mycobacterium leprae. The mechanism of action of thalidomide is not well understood. The immune system reaction to Mycobacterium leprae plays an important role in producing the skin manifestations of leprosy. Scientists believe that thalidomide modifies the reaction of the immune system to Mycobacterium leprae and thereby suppresses the skin reaction. Thalidomide also is being evaluated as a treatment for HIV. Thalidomide was approved by the FDA in July, 1998.
- Trental (Pentoxifylline) - decreases the “stickiness” (viscosity) of blood and thereby improves its flow. This increase blood flow helps patients with peripheral arterial disease to obtain better circulation and oxygen delivery to vital tissues. Pentoxifylline is used in patients to treat a condition of painful legs that develop with exercise because of inadequate circulation to the legs and feet.
- Combination Treatment – Cyclosporine is sometimes used together with azathioprine when one medication fails to work by itself. A common combination is prednisone along with an immunosuppressive drug.
Rest and Exercise
Although rest is important during flares, doctors usually recommend moderate exercise, such as swimming or walking, when the symptoms have improved or disappeared. Exercise can help people with Behçet’s disease keep their joints strong and flexible.
This time I looked up celiac disease since it is another of the autoimmune diseases and can overlap with lupus. I would also like to state that my baby sister has this and it is found in 1 out of every 133 people. It does not get a lot of attention, like lupus, yet it affects so many people. In an effort to raise awareness of autoimmune diseases other than lupus, I have found this information to read. It is amazing that there are so many autoimmune diseases out there! This information was obtained from the website, www.celiac.org. If you would like more information, please see their site. Thanks and good reading!
Celiac Disease (CD) is a lifelong inherited autoimmune condition affecting children and adults. When people with CD eat foods that contain gluten, it creates an immune-mediated toxic reaction that causes damage to the small intestine and does not allow food to be properly absorbed. Even small amounts of gluten in foods can affect those with CD and cause health problems. Damage can occur to the small bowel even when there are no symptoms present.
Gluten is the common name for the proteins in specific grains that are harmful to persons with celiac disease. These proteins are found in ALL forms of wheat (including durum, semolina, spelt, kamut, einkorn and faro) and related grains rye, barley and triticale and MUST be eliminated.
The cause of Celiac Disease (CD), also known as celiac sprue or gluten sensitive enteropathy (GSE), is still a mystery. One out of 133 people in the United States is affected with celiac disease. CD occurs in 5-15% of the offspring and siblings of a person with celiac disease. In 70% of identical twin pairs, both twins have the disease. It is strongly suggested that family members be tested, even if asymptomatic. Family members who have an autoimmune disease are at a 25% increased risk of having celiac disease.
Celiac Disease is not a food allergy – it is an autoimmune disease. Food allergies, including wheat allergy, are conditions that people can sometimes grow out of. This is not the case with Celiac Disease.
Celiac Disease (CD) is unique in that a specific food component, gluten, has been identified as the trigger. When individuals with CD eat gluten, the villi (tiny hair-like projections in the small intestine that absorb nutrients from food) are damaged. This is due to an autoimmune reaction to gluten. Damaged villi do not effectively absorb basic nutrients – proteins, carbohydrates, fats, vitamins, minerals and, in some cases, water and bile salts. If CD is left untreated, damage to the small bowel can be chronic and life threatening, causing an increased risk of associated disorders – both nutritional and immune related.
Dermatitis Herpetiformis (DH) is the skin manifestation of celiac disease characterized by blistering, intensely itchy skin. The rash has a symmetrical distribution and is most frequently found on the face, elbows, knees and buttocks. DH patients can have intestinal damage without obvious gastrointestinal symptoms.
Dermatitis Herpetiformis (DH) is diagnosed by a biopsy of a skin lesion and staining for IgA in the tissues. More than 85% of DH patients have small bowel sensitivity to gluten. Everyone with DH needs to follow a gluten-free diet.
ASSOCIATED AUTOIMMUNE DISORDERS
Insulin-dependent Type 1 Diabetes Mellitus, Liver diseases, Thyroid Disease-Hashimoto’s Thyroiditis, Lupus (SLE), Addison’s Disease, Chronic Active Hepatitis, Rheumatoid Arthritis, Turner Syndrome, Sjögren’s Syndrome, Raynaud’s Syndrome, Alopecia Areata and Scleroderma
OTHER DISORDERS LINKED WITH CELIAC DISEASE
Down Syndrome, Fibromyalgia, Chronic Fatigue Syndrome, Williams Syndrome
Celiac Disease can appear at any time in a person’s life. In adults, the disease can be triggered for the first time after surgery, viral infection, severe emotional stress, pregnancy or childbirth. CD is a multi-system, multi-symptom disorder. Symptoms vary and are not always gastrointestinal (GI). GI symptoms can often mimic other bowel disorders.
Infants, toddlers and young children with CD may often exhibit growth failure, vomiting, bloated abdomen, behavioral changes and failure to thrive.
CLASSIC SYMPTOMS MAY INCLUDE
- Abdominal cramping, intestinal gas
- Distention and bloating of the stomach
- Chronic diarrhea or constipation (or both)
- Steatorrhea – fatty stools
- Anemia – unexplained, due to folic acid, B12 or iron deficiency (or all)
- Unexplained weight loss with large appetite or weight gain
- Dental enamel defects
- Osteopenia, osteoporosis
- Bone or joint pain
- Fatigue, weakness and lack of energy
- Infertility – male/female
- Mouth ulcers
- Delayed puberty
- Tingling or numbness in hands or feet
- Migraine headaches
SOME LONG-TERM CONDITIONS THAT CAN RESULT FROM UNTREATED CD
- Iron deficiency anemia
- Early onset osteoporosis or osteopenia
- Vitamin K deficiency associated with risk for hemorrhaging
- Vitamin and mineral deficiencies
- Central and peripheral nervous system disorders – usually due to unsuspected nutrient deficiencies
- Pancreatic insufficiency
- Intestinal lymphomas and other GI cancers (malignancies)
- Gall bladder malfunction
- Neurological manifestations
A person seeking diagnosis MUST be following a daily diet that contains gluten for at least 4 weeks in order for test results to be accurate. Specific antibody blood tests are the initial step in screening for CD. Patients should always consult with a physician to ensure proper diagnosis.
Recommended Blood Tests:
- Anti-tissue transglutaminase antibody (tTG – IgA and IgG)
commonly used whether or not symptoms are present and the most sensitive test available
- Anti-endomysial antibody (EMA-IgA) – highly specific marker for celiac disease
- Anti-deaminated gliadin peptide (DGP – IgA and IgG)
used when tTG or EMA is negative and in cases where patient is IgA deficient
- Total serum IgA – used to check levels to exclude selective IgA deficiency that results in a false negative test
- Anti-gliadin antibody (AgA – IgG and IgA) not considered sensitive or specific enough for adults, but used for children under 2 because tTG and EMA antibodies may be absent. The anti-DGP test is sensitive in this group.
A patient with positive antibody tests and a patient with selective IgA deficiency are strongly advised to consult with their physician regarding a small bowel biopsy (which is performed endoscopically). A positive small bowel biopsy is required to confirm the diagnosis and assess the degree of damage to the villi in the intestinal lining. Antibody test results can only suggest the presence of Celiac Disease but cannot confirm it. When antibody results and biopsy are inconclusive, or when the patient is on a gluten-free diet, genetic testing of the HLA (human leukocyte antigen) DQ2/DQ8 genes may be helpful. The specific genes DQ2 and/or DQ8 are considered necessary for Celiac Disease to develop. Since one-third of the population also has these genes, the presence of DQ2 or DQ8 does not imply that the person will necessarily develop CD, rather, that they have a genetic predisposition to CD.
Genetic testing does not diagnose Celiac Disease – its largest benefit is that the absence of DQ2 and DQ8 essentially excludes CD.
The onset of Celiac Disease can occur at any time in a person’s life. Once a person is diagnosed, family members should be urged to get tested as well.
Celiac Disease/Dermatitis Herpetiformis (CD/DH) are chronic disorders. The only treatment is the lifelong adherence to the gluten-free diet. When gluten is removed from the diet, the small intestine will start to heal and overall health improves. Medication is not normally required. Consult your physician regarding specific nutritional supplementation to correct any deficiencies. The diagnosed celiac should have medical follow-up to monitor the clinical response to the gluten-free diet.
Adapting to the gluten-free diet requires some lifestyle changes. It is essential to read labels which are often imprecise, and to learn how to identify ingredients that may contain hidden gluten. Even small amounts of ingested gluten can affect those with CD and cause health problems.
Dietary compliance increases the quality of life and decreases the likelihood of osteoporosis, intestinal lymphoma and other associated illnesses.
Because osteoporosis is common and may be profound in patients with newly diagnosed CD, bone density should be measured at or shortly after diagnosis.
Potential harmful ingredients include:
- unidentified starch
Gluten may also be used as a binder in some pharmaceutical products. Request clarification from food and drug manufacturers when necessary.
I am dedicating this post to my baby sister, who has this disease. It is another disease in the autoimmune family and actually can occur concurrently with other autoimmune diseases. It can also run in families. I found this information on the website www.thyroidawareness.com. Since many of these autoimmunes seem to cluster, or over lap, I am researching these and will post information from my search. In the meantime, enjoy reading this informative article. This one’s for you sis!
What is Hashimoto’s thyroiditis?
Hashimoto’s thyroiditis (also called autoimmune or chronic lymphocytic thyroiditis) is the most common thyroid disease in the United States. It is an inherited condition that affects approximately 14 million Americans and is about seven times more common in women than in men. Hashimoto’s thyroiditis is characterized by the production of immune cells and autoantibodies by the body’s immune system, which can damage thyroid cells and compromise their ability to make thyroid hormone. Hypothyroidism occurs if the amount of thyroid hormone, which can be produced, is not enough for the body’s needs. The thyroid gland may also enlarge, forming a goiter.
What are the features of Hashimoto’s thyroiditis?
Hashimoto’s thyroiditis may not cause symptoms for many years and remain undiagnosed until an enlarged thyroid gland or abnormal blood tests are discovered as part of a routine examination. When symptoms do develop, they are either related to local pressure effects in the neck caused by the goiter itself, or to the low levels of thyroid hormone. The first sign of this disease may be painless swelling in the lower front of the neck. This enlargement may eventually become easily visible. It may be associated with an uncomfortable pressure sensation in the lower neck. This pressure on surrounding structures may cause additional symptoms, including difficulty swallowing.
Although many of the features associated with thyroid hormone deficiency occur commonly in patients without thyroid disease, patients with Hashimoto’s thyroiditis who develop hypothyroidism are more likely to experience the following:
- Difficulty with learning
- Dry, brittle hair and nails
- Dry, itchy skin
- Puffy face
- Sore muscles
- Weight gain
- Heavy menstrual flow
- Increased frequency of miscarriages
- Increased sensitivity to many medications
The thyroid enlargement and/or hypothyroidism caused by Hashimoto’s thyroiditis progresses in many patients, causing a slow worsening of symptoms. Therefore, patients with either of these findings should be recognized and adequately treated with thyroid hormone. Optimal treatment with thyroid hormone will eliminate any symptoms due to thyroid hormone deficiency, usually prevent further thyroid enlargement, and may sometimes cause shrinkage of an enlarged thyroid gland.
What is the cause of Hashimoto’s thyroiditis?
Hashimoto’s thyroiditis results from a malfunction in the immune system. When working properly, the immune system is designed to protect the body against invaders, such as bacteria, viruses, and other foreign substances. The immune system of someone with Hashimoto’s thyroiditis mistakenly recognizes normal thyroid cells as foreign tissue, and it produces antibodies that may destroy these cells. Although various environmental factors have been studied, none have been positively proven to be the cause of Hashimoto’s thyroiditis.
How is Hashimoto’s thyroiditis diagnosed?
A physician experienced in the diagnosis and treatment of thyroid disease can detect a goiter due to Hashimoto’s thyroiditis by performing a physical examination and can recognize hypothyroidism by identifying characteristic symptoms, finding typical physical signs, and doing appropriate laboratory tests.
Increased antithyroid antibodies provide the most specific laboratory evidence of Hashimoto’s thyroiditis, but they are not present in all cases.
TSH (Thyroid — Stimulating Hormone or Thyrotropin) Test
Increased TSH level in the blood is the most accurate indicator of hypothyroidism. TSH is produced by another gland, the pituitary, which is located behind the nose at the base of the brain. The level of TSH rises dramatically when the thyroid gland even slightly underproduces thyroid hormone, so in patients with normal pituitary function, a normal level of TSH reliably excludes hypothyroidism.
- An estimate of free thyroxine – the active thyroid hormone in the blood. A low level of free thyroxine is consistent with thyroid hormone deficiency. However, free thyroxine values in the “normal range” may actually represent thyroid hormone deficiency in a particular patient, since a high level of TSH stimulation may keep the free thyroxine levels “within normal limits” for many years.
- Fine-needle aspiration of the thyroid- usually not necessary for most patients with Hashimoto’s thyroiditis, but a good way to diagnose difficult cases and a necessary procedure if a thyroid nodule is also present.
How is Hashimoto’s thyroiditis treated?
For patients with thyroid enlargement (goiter) or hypothyroidism, thyroid hormone therapy is clearly needed, since proper dosage corrects any symptoms due to thyroid hormone deficiency and may decrease the goiter’s size. Treatment generally consists of taking a single daily tablet of levothyroxine. Older patients who may have underlying heart disease are usually started on a low dose and gradually increased, while younger, healthy patients can be started on full replacement doses at once. Thyroid hormone acts very slowly in the body, so it may take several months after treatment is started to notice improvement in symptoms or goiter shrinkage. Because of the generally permanent and often progressive nature of Hashimoto’s thyroiditis, it is usually necessary to treat it throughout one’s lifetime and to realize that medicine dose requirements may have to be adjusted from time to time.
Optimal adjustment of thyroid hormone dosage, based on laboratory tests rather than symptoms, is critical, since the body is very sensitive to even small changes in thyroid hormone levels. Levothyroxine tablets come in 12 different strengths, and it is essential to take them in a consistent manner every day. If the dose is not adequate, the thyroid gland may continue to enlarge and symptoms of hypothyroidism will persist. This may be associated with increased serum cholesterol levels, possibly increasing the risk for atherosclerosis and heart disease. If the dose is too strong, it can cause symptoms of hyperthyroidism, creating excessive strain on the heart and an increased risk of developing osteoporosis.
Other associated disorders
As noted above, Hashimoto’s thyroiditis is a common disorder of the immune system, which affects the thyroid gland. However, much less often, the immune system can also mistakenly target virtually any other part of the body, causing it to malfunction, and this tendency runs in families. Although the majority of patients with Hashimoto’s thyroiditis and their genetic family members will never experience any other autoimmune condition, they do have a statistically increased risk of developing the following disorders:
- Type 1 diabetes mellitus (insulin-requiring)
- Graves’ disease (goiter and hyperthyroidism or overactive thyroid)
- Rheumatoid arthritis
- Pernicious anemia (inability to absorb vitamin B12, potentially causing anemia and neurologic problems)
- Addison’s disease (adrenal failure; the adrenal gland provides cortisol to handle stress and illness)
- Premature ovarian failure (early menopause)
- Vitiligo (patchy loss of skin pigmentation)
- Thrombocytopenic purpura (bleeding disorder due to inadequate platelets in the blood)
- Lupus erythematosus (autoimmune disease that involves skin, heart, lungs, kidneys and joints)
Appropriate management of Hashimoto’s thyroiditis requires continued care by a physician who is experienced in the treatment of this disease.
Have you ever thought, “If only…” about things in your life? I have. I have a long list of “if only’s” and wanted to share a few with you… feel free to add yours too! Each line begins with “If only”
I was healthy and could play with my grandchildren the way I wish I could.
I could walk for long distances as exercise and not hurt and have to stop.
I could go out in the ministry like I used to.
I could plan a day full of events and keep it!
I could remember important things like my anniversary.
I could reach out and help others.
I could travel to places like Ireland, Switzerland and many others.
I could take one weekend and fly to New York City and shop till I dropped.
the pain would stop in my body.
I could attend a nascar race.
the world would have peace.
my eyes could have 20/20 again.
I could move somewhere warm.
my grandchildren will know how much they are loved by me.
I didn’t have to take so many medications.
I would get carded once in a while (vanity dictates this one).
I were still working.
There are many more of these but I just posted a few. Now, tell me some of yours please.
Today was one of those days where you think about things in your life and how to change them for the better. It requires me to make decisions about a few things, but the one I will discuss here is my doctors. I adore my family practitioner very much. She is awesome and never makes you feel like you are stupid when you ask questions.
I am currently in process with my neurologist. In other words, he is still new to me but so far I have been impressed with his manner and decisions in my care. He is doing tests and making sure of the things and how to deal with them. I like that,
My rheumatologist is a nice man. He is also the doctor for my clinical trial I am on (benlysta, soon to be approved). I like him. There is one flaw in the equation though. He seems reluctant to help me in the pain department. So now I have to make a decision. I actually have had three different people tell me I need to go to a pain clinic. These people know me well and after discussing my issues with them, they agreed that maybe I need a new doctor. I really do not want to leave this rheumatologist, however, I may take the advice of these folks and go to a pain clinic for help with my pain.
You see, my rheumy is treating me for depression, but I am not sure he realizes that I am depressed because I am in so much pain right now. I mean seriously, in pain. If you add in the toxic fatigue and everything else, I am in a flare and need help here. I truly believe that if I got the pain meds to help with the pain, I may not be depressed. The pain makes me be a pain. When I am in pain, I am grouchy, grumpy, and depressed because I do not want to be in pain.
Now I need to make an appointment at the pain clinic and see what happens. I will update when I go.
Have any of you had issues like this before? I really could use some feedback from others who have experienced this as well. Thanks!
Yes, I did it again. I spoke too soon. I was in such a great mood and felt so good that I did a bunch of things today. Guess what happened next? For starters, it started raining. Rain is a good thing but with the cold front, it brings more pain and believe me, I am feeling it. Next I started feeling like I was coming down with something and found my lymph nodes are swollen again. Add my hair is falling out and you can see the wolf is punishing me for today.
I hope that tomorrow will be much improved. I am making my mind up that I will have a great day tomorrow! The mindset of thinking positive definitely helps. I have a question though….do other lupies feel like this when it rains? That would be a nice poll question. Ok, will make the poll then and see what the concensus is among those of us with lupus.
So for now I will just post this short note. Have a great night everyone and think positive so our days are quality!
I wanted to post about this because I also have this as an overlapping disease with lupus. I know many who have both as well. I found this information on mayoclinic.com. Hope you read it and will have a better understanding when you are done. Always discuss any issues with your doctor.
By Mayo Clinic staff
You hurt all over, and you frequently feel exhausted. Even after numerous tests, your doctor can’t find anything specifically wrong with you. If this sounds familiar, you may have fibromyalgia.
Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain.
Fibromyalgia occurs in about 2 percent of the population in the United States. Women are much more likely to develop the disorder than are men, and the risk of fibromyalgia increases with age. Fibromyalgia symptoms often begin after a physical or emotional trauma, but in many cases there appears to be no triggering event.
Signs and symptoms of fibromyalgia can vary, depending on the weather, stress, physical activity or even the time of day.
Widespread pain and tender points
The pain associated with fibromyalgia is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.
Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:
- Back of the head
- Between shoulder blades
- Top of shoulders
- Front sides of neck
- Upper chest
- Outer elbows
- Upper hips
- Sides of hips
- Inner knees
Fatigue and sleep disturbances
People with fibromyalgia often awaken tired, even though they seem to get plenty of sleep. Experts believe that these people rarely reach the deep restorative stage of sleep. Sleep disorders that have been linked to fibromyalgia include restless legs syndrome and sleep apnea.
Many people who have fibromyalgia also may have:
Doctors don’t know what causes fibromyalgia, but it most likely involves a variety of factors working together. These may include:
- Genetics. Because fibromyalgia tends to run in families, there may be certain genetic mutations that may make you more susceptible to developing the disorder.
- Infections. Some illnesses appear to trigger or aggravate fibromyalgia.
- Physical or emotional trauma. Post-traumatic stress disorder has been linked to fibromyalgia.
Why does it hurt?
Current thinking centers around a theory called central sensitization. This theory states that people with fibromyalgia have a lower threshold for pain because of increased sensitivity in the brain to pain signals.
Researchers believe repeated nerve stimulation causes the brains of people with fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters). In addition, the brain’s pain receptors seem to develop a sort of memory of the pain and become more sensitive, meaning they can overreact to pain signals.
Risk factors for fibromyalgia include:
- Your sex. Fibromyalgia occurs more often in women than in men.
- Age. Fibromyalgia tends to develop during early and middle adulthood. But it can also occur in children and older adults.
- Disturbed sleep patterns. It’s unclear whether sleeping difficulties are a cause or a result of fibromyalgia. But people with sleep disorders — such as nighttime muscle spasms in the legs, restless legs syndrome or sleep apnea — often have fibromyalgia.
- Family history. You may be more likely to develop fibromyalgia if a relative also has the condition.
- Rheumatic disease. If you have a rheumatic disease, such as rheumatoid arthritis or lupus, you may be more likely to develop fibromyalgia.
By Mayo Clinic staff
Fibromyalgia isn’t progressive and generally doesn’t lead to other conditions or diseases. It can, however, lead to pain, depression and lack of sleep. These problems can then interfere with your ability to function at home or on the job, or maintain close family or personal relationships. The frustration of dealing with an often-misunderstood condition also can be a complication of the condition.
Preparing for your appointment
By Mayo Clinic staff
Because many of the signs and symptoms of fibromyalgia are similar to various other disorders, you may see several doctors before receiving a diagnosis. Your family physician may refer you to a rheumatologist, a doctor who specializes in the treatment of arthritis and other inflammatory conditions.
What you can do
You may want to write a list that includes:
- Detailed descriptions of your symptoms
- Information about medical problems you’ve had in the past
- Information about the medical problems of your parents or siblings
- All the medications and dietary supplements you take
- Questions you want to ask the doctor
What to expect from your doctor
In addition to a physical exam, your doctor may check your neurological health by testing your:
- Muscle strength
- Muscle tone
- Senses of touch and sight
Tests and diagnosis
By Mayo Clinic staff
The American College of Rheumatology has established two criteria for the diagnosis of fibromyalgia:
- Widespread pain lasting at least three months
- At least 11 positive tender points — out of a total possible of 18
During your physical exam, your doctor may check specific places on your body for tenderness. The amount of pressure used during this exam is usually just enough to whiten the doctor’s fingernail bed. These 18 tender points are a hallmark for fibromyalgia.
While there is no lab test to confirm a diagnosis of fibromyalgia, your doctor may want to rule out other conditions that may have similar symptoms. Blood tests may include:
- Complete blood count
- Erythrocyte sedimentation rate
- Thyroid function tests
Treatments and drugs
By Mayo Clinic staff
In general, treatments for fibromyalgia include both medication and self-care. The emphasis is on minimizing symptoms and improving general health.
Medications can help reduce the pain of fibromyalgia and improve sleep. Common choices include:
- Analgesics. Acetaminophen (Tylenol, others) may ease the pain and stiffness caused by fibromyalgia. However, its effectiveness varies. Tramadol (Ultram) is a prescription pain reliever that may be taken with or without acetaminophen. Your doctor may recommend nonsteroidal anti-inflammatory drugs (NSAIDs) — such as aspirin, ibuprofen (Advil, Motrin, others) or naproxen sodium (Aleve, others) — in conjunction with other medications. NSAIDs haven’t proved to be as effective in managing the pain in fibromyalgia when taken by themselves.
- Antidepressants. Your doctor may prescribe amitriptyline to help promote sleep. Fluoxetine (Prozac) in combination with amitriptyline is effective in some people. Duloxetine (Cymbalta) may help ease the pain and fatigue associated with fibromyalgia. And milnacipran (Savella) was recently approved by the Food and Drug Administration for the treatment of fibromyalgia symptoms.
- Anti-seizure drugs. Medications designed to treat epilepsy are often useful in reducing certain types of pain. Gabapentin (Neurontin) is sometimes helpful in reducing fibromyalgia symptoms, while pregabalin (Lyrica) is the first drug approved by the Food and Drug Administration to treat fibromyalgia.
- Physical therapy. Specific exercises can help restore muscle balance and may reduce pain. Stretching techniques and the application of hot or cold also may help.
- Counseling. Cognitive behavioral therapy seeks to strengthen your belief in your abilities and teaches you methods for dealing with stressful situations. Therapy is provided through individual counseling, classes, and with tapes, CDs or DVDs, and may help you manage your fibromyalgia.
Lifestyle and home remedies
By Mayo Clinic staff
Self-care is critical in the management of fibromyalgia.
- Reduce stress. Develop a plan to avoid or limit overexertion and emotional stress. Allow yourself time each day to relax. That may mean learning how to say no without guilt. But try not to change your routine completely. People who quit work or drop all activity tend to do worse than those who remain active. Try stress management techniques, such as deep-breathing exercises or meditation.
- Get enough sleep. Because fatigue is one of the main characteristics of fibromyalgia, getting sufficient sleep is essential. In addition to allotting enough time for sleep, practice good sleep habits, such as going to bed and getting up at the same time each day and limiting daytime napping.
- Exercise regularly. At first, exercise may increase your pain. But doing it regularly often decreases symptoms. Appropriate exercises may include walking, swimming, biking and water aerobics. A physical therapist can help you develop a home exercise program. Stretching, good posture and relaxation exercises also are helpful.
- Pace yourself. Keep your activity on an even level. If you do too much on your good days, you may have more bad days.
- Maintain a healthy lifestyle. Eat healthy foods. Limit your caffeine intake. Do something that you find enjoyable and fulfilling every day.
By Mayo Clinic staff
Complementary and alternative therapies for pain and stress management aren’t new. Some, such as meditation and yoga, have been practiced for thousands of years. But their use has become more popular in recent years, especially with people who have chronic illnesses, such as fibromyalgia.
Several of these treatments do appear to safely relieve stress and reduce pain, and some are gaining acceptance in mainstream medicine. But many practices remain unproved because they haven’t been adequately studied. Some of the more common complementary and alternative treatments promoted for pain management include:
- Acupuncture. Acupuncture is a Chinese medical system based on restoring normal balance of life forces by inserting very fine needles through the skin to various depths. According to Western theories of acupuncture, the needles cause changes in blood flow and levels of neurotransmitters in the brain and spinal cord. Some studies indicate that acupuncture helps relieve fibromyalgia symptoms, while others show no benefit.
- Chiropractic care. This treatment is based on the philosophy that restricted movement in the spine may lead to pain and reduced function. Spinal adjustment (manipulation) is one form of therapy chiropractors use to treat restricted spinal mobility. The goal is to restore spinal movement and, as a result, improve function and decrease pain. Chiropractors manipulate the spine from different positions using varying degrees of force. Manipulation doesn’t need to be forceful to be effective. Chiropractors may also use massage and stretching to relax muscles that are shortened or in spasm. Because manipulation has risks, always go to properly trained and licensed practitioners.
- Massage therapy. This is one of the oldest methods of health care still in practice. It involves use of different manipulative techniques to move your body’s muscles and soft tissues. The therapy aims to improve blood circulation in the muscle, increasing the flow of nutrients and eliminating waste products. Massage can reduce your heart rate, relax your muscles, improve range of motion in your joints and increase production of your body’s natural painkillers. It often helps relieve stress and anxiety. Although massage is almost always safe, avoid it if you have open sores, acute inflammation or circulatory problems.
My area has a Lupus Support Group that meets once a month. The meetings are help the third Tuesday of each month at the Atrium Medical Center. Here is all of the information for those of you in the Middletown and surrounding areas:
Meets: Third Tuesday of each month
Address: Atrium Medical Center, 1 Medical Center Drive, Middletown, OH
Rhonda Roberts, Facillitator
Contact 440-591-7775 or Rhonda@LupusCincinnati.org
I found this article interesting and thought I would share it. It discusses how sleep is important not only for us lupies, but for everyone. Enjoy the reading… this article is from the summer 2010 edition of the magazine “Lupus Now”, cover story.
Sleep Easy – Why Sleep Is Critical When You Have Lupus
By Jenny Thorn Palter
Autoimmune diseases, including lupus, run in Karen Avery’s family. “My brother has discoid lupus, and I lost my cousin to lupus three years ago. She was only 42—the age I am now,” she says.
Avery was diagnosed with lupus in 1989 while in college. “I remember vividly the day I got sick; I fell asleep in class, and when I woke up my hands were blue. I stood up from my desk, and I was in so much pain, I thought, ‘I must have the flu.’ I have always had sleep issues and great difficulty sleeping at night. Plus, I wasn’t eating right, I wasn’t exercising; I was running myself into the ground,” she says.
Today, Avery is a managing director for Marsh & McLennan Companies, an insurance brokerage and consulting firm based in New York City; she runs a global consulting firm for the company. As if that were not enough, she is a new single mother of one-year-old fraternal twin girls, Erika and Eden.
Although Avery has, for the most part, been successfully managing her disease for years, she has been hospitalized four times since 1989 with lupus flares. She believes every flare was caused by a significant and prolonged lack of sleep. For her, getting the right amount of sleep is essential.
What’s in a Zzzz …?
Until the 1950s, most people thought of sleep as a passive, dormant part of daily life. We now know sleep affects our daily functioning and our physical and mental health in many ways we are just beginning to understand.
According to the National Institutes of Health (NIH), approximately 70 million people in the U.S. are affected by a chronic sleep disorder or intermittent sleep problem. NIH reports that women suffer from lack of sleep more than men do; these sleep problems increase in frequency as women age.
The 2009 Sleep in America™ poll, conducted by the National Sleep Foundation (NSF), found that compared with those in poor health, people in good health are two to three times more likely to work efficiently, exercise, and eat healthfully because they are getting enough sleep.
Add lupus to the mix, and the importance of good sleep takes on an even more important role.
Is Sleep Related to Disease?
Sleep deprivation can be harmful to the immune system. Research done through the National Institute of Neurological Disorders and Stroke has shown that neurons that control sleep interact closely with the immune system. For example, as anyone who has had the flu knows, infectious diseases tend to make us feel sleepy. This probably happens because cyto-kines—chemicals that the immune system produces while fighting an infection—are powerful sleep-inducing chemicals. Sleep may help the body conserve energy and other resources that the immune system needs to mount an attack.
Daniel McNally, M.D., a pulmonologist and director of the University of Connecticut’s Sleep Disorders Center, agrees that people with a chronic illness, especially those who live with chronic pain and must deal with sleep-disrupting effects of medications, are likely to have more sleep problems on average. “Being able to help these people with ways to sleep better may give them a bit of relief,” he says. “Here at UConn, we try to train our medical students and residents to make sleep part of their health review with the patient.”
McNally says the university’s medical school curriculum includes four class hours on sleep. “That puts the university in the top 20 percent of medical schools in the country for the amount of time spent teaching about sleep,” he says.
The NSF poll also found that only about 40 percent of Americans feel sleep is as important as exercise or eating well to overall health and well-being. Only 32 percent of those who reported having sleep problems discussed it with their physician. McNally is not surprised.
“Many of the problems with sleep come about because people take it for granted and skip on sleep so they can do ‘x’ or ‘y,’ and then wonder why they feel poorly. I’m always frustrated when someone who should be getting adequate sleep says, ‘Can’t I just take more vitamins?’ ”
How Much Sleep Do We Need?
How much sleep we need depends on many factors, including age. While teenagers need about nine hours of sleep, seven to eight hours of sleep a night appears to be the best amount for most adults. The amount of sleep a person needs also increases if he or she has been deprived of sleep in previous days. Getting too little sleep creates a “sleep debt,” which is much like being overdrawn at a bank. Eventually, your body will demand that the debt be repaid.
We don’t seem to adapt to getting inadequate sleep, either; we may get accustomed to a sleep-depriving schedule, but our judgment, reaction time, and other functions are still impaired.
What’s worse, the practice of “burning the candle at both ends” that is common—and even respected—in Western industrialized societies has created so much sleep deprivation that what is really abnormal sleepiness has become the norm.
But sleep deprivation is dangerous: Sleep-deprived people who are tested by using a driving simulator, or by performing a hand-eye coordination task, perform as badly as or worse than those who are intoxicated.
Are You Making Sure of Sleep?
When Avery decided to have her children, she vowed to take control of both her work hours and her sleep hours. To be sure to get enough sleep to prevent her lupus from flaring, Avery has implemented a variety of strategies. Read her tips for better sleep at lupusnow.org/sleep.
“Without sleep I will have a lupus flare, so sleep is critical for my overall health and well-being,” Avery says. “The quality of my life has really improved over the last six, seven, eight years, because I really took control,” she says. “I said, ‘I’m going to get more sleep, I’m going to exercise, I’m not going to be too dependent on medication, although I have to take it sometimes; I’m really going to force myself to do these things,’ and it’s made a huge difference.”
Tips for a Good Night’s Sleep
- Set a schedule. Go to bed at a set time each night and get up at the same time each morning. Disrupting this schedule may lead to insomnia. “Sleeping in” on weekends also makes it harder to wake up early on Monday morning because it resets your sleep cycles for a later awakening.
- Exercise. Try to exercise 20 to 30 minutes a day. Daily exercise often helps people sleep, although a workout soon before bedtime may interfere with sleep. For maximum benefit, try to get your exercise about 5 to 6 hours before going to bed.
- Avoid caffeine, nicotine, and alcohol. Avoid drinks that contain caffeine, which acts as a stimulant and keeps people awake. Sources of caffeine include coffee, chocolate, soft drinks, non-herbal teas, diet drugs, and some pain relievers. Smokers tend to sleep very lightly and often wake up in the early morning due to nicotine withdrawal. Alcohol robs people of deep sleep and REM sleep and keeps them in the lighter stages of sleep.
- Relax before bed. A warm bath, reading, or another relaxing routine can make it easier to fall sleep. You can train yourself to associate certain restful activities with sleep and make them part of your bedtime ritual.
- Sleep until sunlight. If possible, wake up with the sun or use very bright lights in the morning. Sunlight helps the body’s internal biological clock reset itself each day.
- Don’t lie in bed awake. If you can’t get to sleep, don’t just lie in bed. Get out of bed and do something else, such as reading, watching television, or listening to music, until you feel tired. The anxiety of being unable to fall asleep can actually contribute to insomnia.
- Control your room temperature. Maintain a comfortable temperature in the bedroom. Extreme temperatures may disrupt sleep or prevent you from falling asleep.
- See a doctor if your sleeping problem continues. If you have trouble falling asleep night after night, or if you always feel tired the next day, then you may have a sleep disorder and should see a physician. Your primary care physician may be able to help you; if not, you can probably find a sleep specialist at a major hospital near you. Most sleep disorders can be treated effectively, so you can finally get that good night’s sleep you need.
(Adapted from When You Can’t Sleep: The ABCs of ZZZs, by the National Sleep Foundation, courtesy of the National Institute of Neurological Disorders and Stroke)
Campground in trailer
Hello fellow lupies and friends! I am writing this from the campground, in my warm bedroom. I am enjoying a nice night in the campground, relaxing and doing a whole bunch of nothing. My home away from home, my happy place.
When I was younger, I was a tent camper only. I told my kids that I would never sell out and own a trailer with running water, comfy beds and air conditioning/heating. Those people were not really camping, I said in my bravado.
Ah, the ignorance of youthful declarations. I now own a 29 foot travel trailer that has all the modern conveniences, including those listed earlier. Did I sell out? I prefer to think that I grew up. When you get to be my age (50), you find sleeping on the ground to be an uncomfortable experience.
You see, our bones creak now, the ground has grown harder (I swear it has), I cannot get up from the ground without help most times, and going to the bathroom several times a night are not conducive to a relaxing experience for me anymore. Add the waking up to find your miniscule air mattress has deflated and you have to wake up the entire campground refilling it and then you add the pain all day from not being warm and also the lack of sleep, you are now not enjoying the experience anymore.
Let’s face it, I sold out for comfort. My kids are now grown with kids of their own and they all tent camp. They take great delight in reminding me how I asserted never to own a trailer. Ah, the foolishness of their age. When they are my age, I see them in travel trailers too. When their bones ache, they will appreciate the comfort of a queen size bed. When they are cold, they will appreciate the central heating. On those hot summer nights, they will enjoy the feel of the cool, crisp sheets on their beds and the rush of cool air from the a/c. Do not even mention the full bathroom with shower and hot water. Ah, the comforts we enjoy now.
So, I am writing this in the comfort of my trailer, with the furnace on since it is in the 40′s tonight. In the morning, I will brew hot coffee and enjoy a hot breakfast cooked on my stovetop. I an wash my dishes in hot water in the sink and drain it afterwards (not lugging a heavy plastic tub to dump somewhere). I can then sprawl about sipping coffee and reading a good book. I think comfort is much more relaxing than tenting. Yes, it is official, I have sold out, but oh, it was so worth it!
I am posting these articles to show why many doctors feel unable to adequately treat chronic pain with medications that have been shown to not only work for those with chronic pain, but can actually lead to a much improved quality of life.
Please read these articles and form your own opinion. I welcome comments as well.
“The Police State of Medicine”
First, I would like to thank the Drug Policy Foundation for the opportunity to speak to you today. I understand that the rights of patients to effective treatment and the impact of current drug policy on the doctor-patient relationship are very much on your minds, as they are on mine. I offer my story as a case study of regulatory abuse, as we try to fashion an adequate political and legal response to what I think of as “The Police State of Medicine.”
I will begin with a review of the legal events in my case. I will then tell you about my patients and the impact of the legal action against me on them. Finally, I would like to address two related questions:
How does the police-state of medicine affect medical care?
and. . .
What can we do about it?
What Happened to Me?
In May of 1996, my license to practice medicine was suspended without a prior hearing by the Commonwealth of Virginia after the deaths of two of my patients were incorrectly attributed to my treatment. I was charged with having prescribed excessive doses of opioid analgesics in the treatment of 30 patients who, it was acknowledged by the Board of Medicine, had conditions causing intractable pain. The charges were brought without any apparent reflection by the Board on the applicability of Virginia’s Intractable Pain Act, upon which I was relying for legal protection.
The hearing might well be characterized as a Kafkaesque inquisition. This was not anything close to an open-minded search for the truth in which legal adversaries present evidence before an impartial finder-of- fact. This Board thought it knew from the outset what constituted proper pain management, and it thought it knew that the high doses of medication I prescribed to many of my patients were illegitimate and without clinical rationale. The number of pills I prescribed was all the evidence the Board or its prosecutors thought they needed. They had not even bothered to subpoena my medical records!
When we pointed out that, under the Virginia Intractable Pain Act, dose alone was an insufficient legal basis for disciplinary action, rather than dismiss the charges, the hearing was turned into a fishing expedition for evidence with which to smear my name and to provide a rationale for the harm they had already caused me and my patients by the summary suspension. The prosecuting attorney sponsored testimony to the effect that I was taking money under the table for prescriptions — testimony which was subsequently shown to be pure fabrication — without disclosing his witness’ prior felony conviction for fraud. He also presented testimony from an addiction specialist, who, it turned out, had himself been disciplined over a ten year period by this very Board. He had been an anesthesiologist who was addicted to Fentanyl, a strong opioid used in anesthesia, which he stole from his patients — leaving them to buck in pain on the operating table.
My experts — all pain specialists of international repute (one of whom, Dr. C. Stratton Hill, is being honored at this conference) — were harassed by cross-examining Board members. My patients, many of whom had traveled from distant states, were ignored, ridiculed, insulted, and ultimately condemned to pain and misery.
After this caricature of a hearing, my license was revoked. Although the revocation was stayed and my license was restored after three months, my authority to prescribe the controlled substances necessary to treat my patients was withheld. The Virginia proceedings set in motion a cascade of legal action against me. The authorities in the District of Columbia, where I was actually in practice, suspended my license. This provided the DEA a basis to revoke my registration — although ultimately they agreed to transfer my registration to my Virginia address with restrictions paralleling those imposed by the Virginia Board.
After an informal hearing in August of 1997, the Virginia Board restored my ability to prescribe pain medicine and accepted a protocol for treating pain patients that was essentially the same as I had been using prior to my suspension. By doing so, the Board appears to have accepted the legitimacy of the therapeutic principle that calls for adjustment of medications according to patient response without limit as to dose or combination. The Virginia Board’s action remains, at best, a symbolic gesture without practical consequence, however, unless and until the DEA restores my registration and the Board has an opportunity to demonstrate its good faith.
An appeal from the original Board Order of August 1996, in which the Court is called upon to interpret the extent, if any, of the safe-harbor protection afforded by the Virginia Intractable Pain Act, was heard in August of this year (1997). The Court has not yet issued its opinion. Nor has the DEA responded to the application I submitted over four months ago for full restoration of my prescribing privileges. It’s not their pain.
Only participants can have any idea of the exorbitant personal and professional costs such legal proceedings exact. But this was nothing, when compared to the impact on my patients.
What Happened to My Patients?
At the time of the Virginia Board’s suspension in May of 1996, I had over 200 patients with intractable pain from all over the United States. Some of their stories are gripping:
A young woman whose daily headaches were so bad that she had the nerves to the back of her head cut, only to find that after a brief respite, her pain came back worse than before.
A gentleman, now in his 50s whose legs had to be amputated when he was 18 years old. They had been frozen when he was trapped in his car after an accident in 30-below weather. He subsequently had the lower portion of his torso removed. With the benefit of pain medicine, he was able to work and support himself.
A physician who had such severe reflex sympathetic dystrophy that his left arm became gangrenous and had to be amputated.
A woman in her thirties whose leg had been almost completely severed at the thigh in a motorcycle accident. The orthopedist who reattached her leg also treated her pain with opioids. But after he retired, noone would continue her treatment.
There were over 200 of these patients with crippling pain from failed backs, arthritis, multiple sclerosis, interstitial cystitis, arachnoiditis, RSD, TMJ, trigeminal neuralgia, and phantom limbs. . . the list goes on and on and on. Many of them had come to me after years of unsuccessful attempts to obtain relief from a multitude of procedures, doctors, and pain clinics. They were treated like addicts and criminals.
They were stigmatized, insulted, neglected and abandoned. Betrayed by the whole medical profession with the refrain, “I would like to help you, but I can’t. I don’t want to lose my license.” But who can blame the doctors, who are themselves the victims of the thuggish drug-control police and the heartless and mindless bureaucrats who serve on boards of medicine.
When my patients came to see me, they were terrified that I too would reject them, or subject them to more tests, more procedures, more expense and delay. But my approach was different. I asked them what had worked in the past, and that was my starting point. I let their response to medication guide my treatment. If one medication didn’t work, or made them sick, we — the patient and I — tried another. If a medication became less effective, we increased the dose. Sooner or later, we found what worked best for each patient.
The response to pain relief was dramatic. People who hadn’t worked in years went back to work. People who could barely get out of bed began to move, even to dance. Some no longer needed crutches or a cane. Almost everyone reported that their lives were better. Many said that I had given them their lives back.
When word went out that my license had been suspended, there was panic as patients contemplated what it would mean for the pain to return. Lives that had been rebuilt on the basis of pain control had lost their foundations. After I lost my license, the fear was palpable: pharmacists afraid to fill my prescriptions, doctors afraid to take my patients, and patients desperate for continuity and certainty. Added to the stigma of taking morphine, methadone, or Dilaudid, was the stigma of being one of “Dr. Hurwitz’s” patients.
There were a few happy stories. A few physicians who had known my patients before they came to me and saw their improvement while under my care were willing to continue the treatment. Pain specialists at some of the academic centers and a few brave doctors in private practice were willing to take my patients. Some of my patients, those who had saved a reserve supply, were able to obtain a modicum of pain relief and avoid the symptoms of abrupt withdrawal.
Some stories were not so happy. A few patients went through horrible withdrawals — a number who availed themselves of medical help were admitted to psych units and detoxed cold turkey. Some found doctors who were willing to treat them, but were unwilling to continue what had been successful medication regimens. Some were exploited by doctors who imposed expensive and risky procedures as a condition for receiving pain medication. And some just gave up, exhausted by insurmountable obstacles.
There were two suicides directly attributable to the prospect of inadequate pain control.
How Does The Police-State of Medicine Affect Medical Care?
The quasi-criminal liability imposed on physicians distorts clinical information and medical judgment, impedes the development of clinical expertise, undermines the ethical commitments necessary to medical practice, and leads to the abandonment, wasted lives, and deaths of patients with intractable pain. Holding physicians liable for the misbehavior or dishonesty of their patients turns physicians into policemen and is, in principle, incompatible with effective medical care.
In what other context do we sit in judgment of a patient’s moral worth to determine his eligibility for treatment? Is a former addict with AIDS less entitled to medical care than the victim of a contaminated transfusion? Or less entitled to pain relief with opioid medications?
To me, the unequivocal answer is no. We are not society’s policemen, nor should we be. I am not arguing that we should be indifferent to the use to which our prescriptions are put. I am arguing that patients deserve the benefit of the doubt, that a Draconian response to the occasional, but inevitable physician error in providing medication to the dishonest patient who may be misusing or diverting medication has the inevitable consequence of denying pain relief and perhaps condemning to death the honest one.
Effective medical care requires trust in both directions. A patient must trust that his physician is acting in the patient’s medical interest. But how is this possible when the physician’s career is threatened by doing so? A physician must trust that his patient is reporting his circumstances and symptoms accurately. How is this possible when the patient is afraid that the truth will look suspicious, and that merely looking suspicious will prompt abandonment?
Under current regulatory policies, distrust governs the treatment of pain and subverts the usual clinical calculus of risk and benefit. Patients are subjected to a modern version of trial by ordeal, where their credibility as patients is measured by the pain and indignity they are willing to endure and the expense they are willing to incur. And physicians who are unwilling to impose these indignities as a condition for pain treatment are punished with the destruction of career, reputation, and livelihood.
In the end, the only important clinical question should be: What is best for the patient? As physicians, we treat individuals for the simple reason that they are fellow human beings, and our treatment must respect their humanity. Respect requires that patients be afforded the dignity of choice — the freedom to choose or refuse treatments based on their calculus of risk and benefit and cost. The current regulatory regime effectively denies most patients the dignity and respect that simple humanity requires.
What Can We Do About It?
The stakes in this battle are too great to leave its outcome to the valiant efforts of the dedicated few. We need reinforcements in the form of legal help, publicity, and financial support to help make boards of medicine and the DEA legally and politically accountable for the misery they engender. Intractable pain acts are not enough. And if boards of medicine were, as a practical matter, legally, ethically and politically accountable, such statutes would not be necessary.
Our strategy should be to raise the cost to the regulators of their regulatory tyranny and to lower the cost to physicians, pharmacists, and patients of defending their rights. We need to destroy the public’s naive presumption of the regulators disinterested good faith, to debunk the myth that medicine is being regulated in the public interest, and to reveal the abuse of power for what it is. Only then will we empower physicians to help their patients, and patients to control their pain.
* Dr. William Hurwitz, MD, is 51-years old and a graduate of Columbia College (1966, BA), Stanford Medical School (1971, MD) and George Mason University School of Law (1996, JD). Married with two children, Dr. Hurwitz resides and now practices medicine in McLean, Virginia — prior to the revocation of his medical licenses, he practiced in Washington, DC. Dr. Hurwitz and this issue have been the focus of in-depth reporting by CBS’s “60 Minutes,” “US News & World Report” and PBS’s John McLaughlin.
Remarks By Dr. William Hurwitz,* MD
October 18, 1997
NEW ORLEANS, LA
The Drug Policy Foundation*
Copyright © 1997 by Dr. William Hurwitz, MD
article By Katherine Eban Finkelstein
Copyright Playboy Magazine, August, 1997
|THE DEA IS BUSTING DOCTORS FOR PRESCRIBING DRUGS-AND PATIENTS ARE DYING IN PAINDONALD DEWBERRY, 44, a retired aircraft mechanic, went to Dr. John McFadden several years ago after two failed surgeries for degenerative disk disease. 7he pain in his neck was crippling, and even moving his eyes triggered it. Dr. McFadden, who is medical director of the Tupelo Pain Clinic in Tupelo, Mississippi, prescribed Dewberry narcotic painkillers known as opioids, which are highly effective and rarely addictive when taken to relieve pain.Unfortunately for McFadden, he was under surveillance. Federal and state narcotics investigators first went to his red-brick clinic in 1987 on a tip from the Mississippi State Board of Pharmacy that he was overprescribing painkillers. They sifted through his inventory logs for evidence that narcotic medications had been diverted to the street for black-market resale. McFadden claims that only minor record-keeping errors were found. Yet because McFadden specialized in pain treatment (and therefore had prescribed narcotics such as Vicodin and Tylenol #3), he was subject to continuing suspicion. Over the next nine years, agents from the Mississippi State Board of Medical Licensure periodically investigated his prescribing habits.
A new front had been opened in the drug war, and patients in pain were potential enemies. Even though McFadden, the only pain specialist in northern Mississippi, administered legal medications of great benefit, his prescribing of narcotics targeted him as a suspect.
In March 1996 a state medical board investigator arrived at his clinic with a search warrant. “We had been expecting him. We knew he had to do his job, so we were friendly and said, ‘You can look at any-thing you want,”‘ McFadden recalls. The agent seized the medical charts of 36 patients. Several months later McFadden was notified that the medical board had charged him with 11 counts of violating the Mississippi Medical Practice Act, including unprofessional conduct “likely to harm the public.”
After two days of administrative hearings and 30 minutes of deliberation, the medical board-whose members are appointed by the governor-suspended McFadden’s medical license and prohibited him from prescribing a variety of controlled substances on an outpatient basis. McFadden’s censure has had a chilling effect in Mississippi medical circles. To avoid similar repercussions or scrutiny, other area doctors have virtually stopped prescribing narcotics. One doctor in Tupelo posted a notice in his waiting room: DO NOT ASK ME TO REFILL PAIN MEDICATIONS. In a doctor’s office 40 miles away in Corinth, a sign read DON’T ASK FOR OPIOIDS.
McFadden’s patients, meanwhile, were left in pain. When Dewberry returned to his longtime family practitioner in nearby Oxford and asked for a prescription, the doctor chewed him out. “‘You’re just an addict,”‘ Dewberry recalls him saying. He has since stopped taking medication, and the pain keeps him in bed: “I’m in this haze of fighting pain. I’m trying to raise two teenagers, and I have a mortgage on the house. But if I said, ‘Heck, if it all falls to pieces . . .’ then it does.”
By almost any measure, America has lost its war on illegal drugs. Cocaine and heroin still cross the nation’s borders. “Cat,” or methcathinone, can be purchased in any city, despite endless law enforcement efforts to buy and bust. Meanwhile, the real threat from illegal drugs has fed America’s opiophobia, an irrational fear of narcotic pain relief. Needing a winnable war, the government has cracked down in doctors’ offices. Across the country, state agents, allied with the DEA, have staked out pain clinics under the assumption that wherever narcotics are prescribed, diversion of the drugs will soon follow. In pursuing this theory, the government has criminalized an entire class of patients and scared doctors into abandoning them.
As a result, pain is grievously undertreated. According to the National Chronic Pain Outreach Association, an estimated 34 million patients suffer chronic pain and lose 50 million workdays a year. Seven million of these patients cannot relieve their pain without opioids, but there are only approximately 4000 doctors in the country willing to prescribe them. A recent New England Journal of Medicine editorial noted that 56 percent of cancer outpatients and 82 percent of AIDS outpatients received inadequate pain treatment. Fifty percent of hospitalized patients with a range of illnesses also received inadequate pain treatment.
Our drug war has overshadowed our pain crisis because the former is fought by politicians, while the latter is lived by patients who are often confined to bed. In the absence of an effective pain lobby, politicians have been able to whip the public into an opiophobic frenzy. “All you have to do is scream about the drug hysteria, then everyone tucks his tail and runs,” says Dr. Stratton Hill, a Houston pain specialist. “No politician wants the charge that he’s soft on drugs.” Late last year the Clinton administration challenged referenda in Arizona and California that would legalize the medical use of marijuana for easing the pain and nausea that are related to cancer and its treatment. This past March the president emerged from knee surgery declaring that he would not medicate his pain with narcotics.
While doctors may shrug off such proclamations, they cannot afford to ignore the investigative machinery that opiophobia has built. “We have established a bureaucracy to catch doctors making errors,” says a leading researcher in pain treatment. “As a result, fear is endemic among physicians.”
In 1984 Congress handed the DENS Office of Diversion Control discretionary power to revoke a doctor’s registration to prescribe medicine. (In order to write prescriptions, doctors must be registered with the DEA.) The 1984 legislation enabled the government to yank this registration if a doctor commits “such acts as would render his registration . . . inconsistent with the public interest.” This phrase, buried in the fine print of the Dangerous Drug Diversion Control Act, significantly expanded the ODC’s latitude. Before 1984, the agency could revoke a doctor’s registration for only three reasons: If he had falsified a prescription, was convicted of a felony relating to controlled substances or had his state medical license revoked, denied or suspended.
With the passage of the act, the rules changed overnight-from black-and-white to gray. Enforcers could pronounce guilt and revoke a registration simply by declaring that the public interest had been threatened. Suddenly, prescribing that was determined to be against the “public interest” was being used as prima facie evidence of diversion. The government had effectively criminalized narcotic pain treatment and had begun to practice medicine.
Since its creation in 1973, the ODC has had a dual function. It was charged with ensuring the availability of pharmaceutical drugs for legitimate needs and preventing their diversion for illegitimate sale and use. But the 1984 drug bill changed everything. Despite limited data on the origins or amount of diversion, the agency targeted doctors and patients, performing search and-seizure operations in the offices of baffled clinicians. The peremptory justice was supported by Orwellian logic:
Patients at pain clinics use narcotics.
Narcotics can be addictive.
Therefore, pain patients are addicts.
This new system encouraged doctors to suspect the motives of their patients. “As doctors, we believe in people, but the government expects each of us to be an FBI unit. We’re supposed to trust no one,” explains Dr. Frank McNiel, a family practitioner in Knoxville, Tennessee.
In deciding who to bust, investigators rely heavily on medication categories that were established in 1970 under the Controlled Substances Act. The DEA groups medications into five different “Schedules,” depending on their potential for abuse. Schedule V contains some prescription drugs as well as over-the-counter cough medicines, which are rarely abused. Schedule IV includes benzodiazepines such as Valium. Schedule III contains anabolic steroids, some barbiturates and blends of aspirin and codeine. Schedule I includes heroin, LSD and marijuana, which have no medical use, according to the feds.
Overwhelmingly, the 1984 provision led agents to focus on Schedule 11. The painkillers here, including morphine and Dilaudid, have a high street value. Looking for a way to combat diversion, agents relied on the all-purpose “public interest” dictum. They used it as a preventive tool, to bust law-abiding doctors prescribing medication that might be diverted down the road. On both the state and federal levels, the distinction between enforcement and prevention collapsed, as did the distinction between criminal behavior and the treatment of pain. Once Schedule II drugs were involved, the DEA decided to shoot first and ask questions later.
Federal and state arsenals are now bristling with weaponry. The DEA performs long-range computer surveillance with the Automated Reports and Consolidated Orders System. This database logs every transaction between manufacturers and distributors of controlled substances. If a large quantity of barbiturates, for example, were distributed in a certain city, it could mean that an organized group had diverted the medication. Law enforcement authorities would launch an investigation.
States use their own monitoring apparatuses to track the prescriptions of individual doctors and their patients’ habits. Some states require doctors to report even their terminal cancer patients as addicts if they are prescribed opioids for a certain period of time. In eight states, including California and New York, doctors who want to prescribe from Schedule II must order registered prescription forms that have multiple copies: The doctor retains one, the pharmacist keeps one and the third copy is sent to state health or narcotics-control agencies. Studies show that doctors in these states have decreased the amounts of Schedule II drugs they prescribe by 40 percent to 60 percent. Possibly, some of the drugs had been diverted and the crackdown was actually successful. But studies also have shown that doctors in these states increased their prescribing of less-regulated painkillers by almost the same percentages. These alternative drugs are often less effective in treating pain and can also be more dangerous to patients than are Schedule II drugs.
The scrutiny has led doctors to ration pain medicine and ignore pain — necessary restraint in a world of diversion, enforcers would have us believe. “Even if you treat a patient with a terminal malignancy, it’s irresponsible to write a prescription for 500 Dilaudid tablets,” says Dr. James Winn, executive vice president of the Federation of State Medical Boards. “If the patient dies three days later, in a legitimate family the rest should be flushed down the commode. But sometimes a family member picks them up. We have a major drug problem in this country, and a lot of it comes from doctors.”
The DEA provides no detailed record of the amount of diverted prescription drugs it recovers each year. The agency also lacks comprehensive data on the origin of the medication it seizes. Thus, despite Dr. Winn’s assessment, there is little evidence to suggest that the narcotics which originate in doctors’ offices are the same drugs which wind up on the street. In fact, DEA officials concede that the majority of black-market narcotics originate from crime rings in foreign countries, where the drugs are manufactured illegally.
In February ODC director Gene Haislip retired after 17 years, leaving behind an agency known for its intimidation tactics. Haislip maintains that legitimate prescribing has not been deterred at all by his policies. “I don’t believe doctors would not prescribe because of there being a government report any more than they would not make money because they have to report it on their income tax,” he claimed confidently in a speech that outraged doctors.
Despite this shaky analogy, the IRS doesn’t destroy your livelihood, it simply takes a portion of it. A DEA fine, or even a protracted state medical board investigation, can threaten your medical practice, your income and the wellbeing of your patients. A state board ruling nearly ruined Dr. McNiel’s life. A family practitioner who ran an outpatient clinic in Mosheim, Tennessee, McNiel vividly remembers the day he was first targeted. “In 1992 an investigator with a badge walked into my office and said I was under investigation. She had a list of patients and said she wanted to look at charts. She dug around for a few days, then disappeared.” As McNiel puts it, her visit “encased the office in ice.”
Working for 15 years as a missionary doctor in Honduras and Nicaragua, McNiel had witnessed all kinds of injustices. But nothing could have prepared him for what happened next. More than a year later, he received an official envelope that contained a long list of charges: “The only thing it didn’t include was rape because they didn’t think of it. They make you out to be the scum of the earth. This is devastating to a person’s self-esteem.” The medical board brought charges against McNiel of nontherapeutic prescribing in the cases of ten patients, in addition to mentioning, without any explanation, “other cases too numerous to count.” The board, seemingly making no effort to conceal its arbitrary methods, also proposed more than $20,000 in fines.
National data suggest that such administrative intimidation is widespread. In 1994 state medical boards took action against 434 physicians for prescribing in violation of state medical practice acts, according to the Federation of State Medical Boards. However, the DEA, which often works with state medical boards, pursued only six criminal cases against doctors in 1994, according to information obtained from a database of justice Department files. Of these, only one doctor, from Puerto Rico, was found guilty.
The data from 1995 are similar. State medical boards took 392 actions against doctors for prescription violations. Only 11 cases were pursued by the feds that year, but there were no criminal findings. Two of the cases were dismissed because of minimal federal interest. The picture is the same at the state level. Last year in New York, the Bureau of Controlled Substances adjudicated 36 cases against doctors. However, 14 were civil cases, 14 had no charges issued and there was a smattering of warnings. Only one case was criminal.
Though these numbers seem small, each doctor works in a close-knit community. The flash of a badge can send shock waves through a hospital, or a state, and indelibly change prescribing habits. Some doctors in New York still shudder when they think of Dr. Ronald Blum, former deputy director of the Kaplan Cancer Center at New York University. In 1987 two state drug agents with guns and badges arrived at Dr. Blum’s office. Though Blum was not arrested, the agents threatened to slap him with three record-keeping violations. Eighteen months later, he received a letter of warning and the investigation against him was dismissed. Nonetheless, Blum’s “case” was used to bolster the statistics on state drug crackdowns.
The DEA, for its part, is quick to point out that its drop-ins on doctors are not arrests. An agency spokesperson explains: “It is important for people to realize that just because the DEA initiates an action, that doesn’t mean there’s criminal activity.” Which is just the point.
A lawyer in Austin, Texas who has defended numerous doctors from overprescribing charges describes the agency’s numbers game: “The DEA agents show up like a blitz, unannounced, in their little black jackets. They’ll scare the you-know-what out of a doctor and get him to surrender his DEA registration. They get instant results for their own data, and they make a quick bunch of money for the government, a $25,000 fine. But the doctor is screwed, because he doesn’t have his DEA number and can’t reapply for a year. When he does, the medical board says, ‘You gave up your DEA number. You must have done something wrong.”‘ It is a rare doctor who, when threatened with these sorts of grave charges, will refuse to surrender his registration.
The Mississippi medical board that heard McFadden’s case makes it clear that it hails administrative citations as victories. “We are number one in the country for bringing the most disciplinary actions per 1000 physicians,” says Dr. Thomas Stevens, the board’s executive officer. “I’m not proposing that we’re the best in the world. But it might be a sign that we do a good job.” Zealotry aside, the board’s complaint counsel, Stan Ingram, contends that the hearings are fair. “The board members trying the case play no role in the investigation and have little knowledge of the facts prior to the hearing,” he explains. In fact, a board member who is McFadden’s neighbor was permitted to recuse himself; thus due process was protected.
Nonetheless, McFadden’s son-in-law, Sean Milner, a Jackson, Mississippi based attorney, was appalled by the blatant conflicts of interest that riddled the hearing. For example, a state investigator collected the evidence and Ingram prosecuted the case; both are on the board’s payroll. “It’s the kind of justice you see in third world countries,” Milner says. “The judges are the investigators. They hire the prosecutor. They sit as the jury, plus referee the match. How many cases do you think they lose?”The board did not demonstrate that patients had complained. It presented no evidence that McFadden had harmed patients. The board did enter evidence that McFadden kept incomplete records. On several occasions, for example, he prescribed from home when his patients had crises, then failed to enter those prescriptions into his office records. Yet the board’s medical expert, a neurosurgeon, never addressed record keeping. Instead, he debated one of McFadden’s diagnoses, then testified that in his opinion, McFadden had treated his patients in good faith.
“I don’t want to use the term witch hunt, but I don’t know how else to describe the Board of Medical Licensure,” says a pharmacist who used to fill McFadden’s prescriptions. McFadden has begun the arduous process of appealing the board’s ruling.
It is now probably easier for a drug addict to buy black-market prescriptions on a street corner than it is for Dewberry to obtain a legal prescription for Vicodin. Meanwhile, there is no evidence that this policy has slowed real diversion, according to Dr. James Cooper, associate director of the clinical services research division at the National Institute on Drug Abuse. “It’s misleading to say that diversion comes only from prescribing. The research data aren’t available. No one knows the nature and extent of diversion from doctors’ offices, thefts, forgeries and smuggling.”
On paper, the DEA supports the use of opioids to treat pain patients. Its 1990 Physician’s Manual states that narcotic analgesics have “a legitimate clinical use and the physician should not hesitate to prescribe, dispense or administer them when they are indicated for a legitimate medical purpose.” In reality, the agency’s crackdown has been so complete that obtaining legal pain medicine has become practically an underground activity. On August 10, 1996 the Virginia Board of Medicine revoked Dr. William Hurwitz’ license, claiming he had overprescribed opioids. Many of his 220 patients, who suffer intractable pain and came from around the country to see him, have been unable to find new doctors. Several patients are being tracked by DEA agents; they speak to one another through Web sites. Two committed suicide because of the prospect of untreated pain. One recorded a final videotape, saying that his inability to find pain relief led him to seek death.
Dr. Hurwitz, 51, who obtained a law degree after he was first investigated in 1991, believes the state shouldn’t interfere with a patient’s right to treatment: “It is important to assess patient reliability. But I refuse to hold a moral screen over eligibility for medical care.” Although some of his patients had prior addiction histories, he issued them prescriptions for clear medical needs. “I wanted to make sure that people were as functional and comfortable as possible,” he says. “I felt the sheer force of numbers would protect us, by illustrating the need for pain treatment.”
That illusion has been shattered. A dozen of his patients have contacted Dr. Jack Kevorkian in Detroit, who receives several hundred calls a week from patients suffering from intolerable pain. In April, Susan T., a registered nurse and a former Hurwitz patient, sent Dr. Kevorkian her final set of medical records.
Years ago, she had been vital and athletic. But searing pain in her legs and buttocks from a botched gynecological operation and a subsequent back injury left her unable to get out of bed. Her only relief came from Hurwitz, who had her up and walking with Percocet and morphine. Since his license was revoked, she has called more than 15 doctors. Most refused to treat her after she disclosed her connection to Hurwitz.
This experience led Susan to Kevorkian. She explains, “I’m pushing hard to get financial things in order, to set up a revocable trust and have my house cleaned out of extra stuff so my husband won’t have to do it.” Of course, she could take another patient’s pain medication. But that would be diversion. “It’s plain illegal and there’s a line,” says Susan. “Many things are worse than death. One of them is losing the last of your dignity.”
Patients who need narcotics are often given less-regulated alternatives that are far more dangerous. Doctors who fear scrutiny rely heavily on antiinflammatory drugs such as arthritis pills, which can cause internal bleeding, liver damage and ulcers. One study has shown that these alternative medications kill 17,000 pain patients a year. Comparatively, the death rate from narcotic painkillers is “vanishingly small,” says Dr. Brian Goldman, a University of Toronto researcher who has studied prescription drug diversion. “There is no gastrointestinal bleeding, or kidney or liver failure. An accidental death could be from respiratory failure, but pain triggers you to breathe.”
Despite these facts, says Dr. Goldman, “the underlying logic is that death is better than addiction. ‘Narcotics can addict you. The alternative drugs can kill you. Therefore, we should prescribe those.”‘
Doctors fear drug investigators and with reason. A 1987 DEA study showed that in states with a triplicate monitoring system, only 21 percent to 35 percent of physicians bothered to order the required forms. They simply chose never to prescribe drugs that created added scrutiny. As Michael Troyer, director of the National Chronic Pain Outreach Association, puts it, “Doctors do not want to be identified as treating pain patients for fear of being investigated.”
In 1994 the DEA tried once again to augment its weaponry against legal narcotics. The agency drafted legislation, the Controlled Substances Monitoring Act, that would have required physicians to use government-issued prescription forms for all controlled substances. The Department of Health and Human Services deftly quashed the plan, noting that the DEA had submitted no evidence that the scope of drug diversion required such “drastic action.” This defeat signaled a subtle ebb in public opiophobia.
Support for pain patients has been growing, partly fueled by outrage over regulatory excesses. Since 1989 ten states have passed intractable-pain treatment acts, supporting the medicinal use of narcotics for patients with severe pain. In Oregon, Republican state senator Bill Kennemer underwent a bitter personal experience that led him to sponsor what came to be known as the Compassionate Care Act. In 1990 his wife was diagnosed with terminal breast cancer, and she was in excruciating pain. After her third day on morphine, her oncologist said he’d have to take her off it: “‘It’s addictive,”‘ Kennemer recalls the doctor saying. “I looked this guy in the eye and said, ‘What does it matter?’ He said, ‘I’ll lose my license if I don’t cut her off from morphine.’
“If you can’t eliminate the pain, you have to medicate it,” says Kennemer, who forged an alliance between the Oregon Catholic Conference, Citizens for a Drug-Free Oregon and the Oregon Right to Die group.
As patients secure their rights, doctors have also been emboldened to launch counterattacks. In 1994 the Florida Board of Medicine went after Dr. Katherine Hoover, charging that she had overprescribed controlled substances to seven patients. After a two year battle in which Dr. Hoover acted as her own lawyer, the appeals court chided the medical board for being “overzealous” and dismissed its case as “founded on a woefully inadequate quantum of fact.”
Hoover had moved to West Virginia to run her family’s farm and practice medicine. Given the Florida imbroglio, she was rigorous about documentation. She required her patients to sign a contract about the risks and benefits of narcotic pain relief, and she committed them to using a single pharmacy and not misusing their medication. However, it wasn’t long before she heard from the West Virginia Board of Medicine.
The State Department of Health and Human Resources had filed a complaint with the board regarding Hoover’s treatment of five patients whose pharmacy records had been singled out for review. The complaint alleged that she had prescribed in excess of her peers. Hoover points out, however, that she is the only internist in the area committed to pain management. Who, then, are her peers?
Hoover is defending herself once again. “I am not pretending to be a lawyer. I’m doing all of this because I’m a doctor,” she says.
She has filed a $10 million suit against the State Department of Health and Human Resources and the West Virginia Board of Medicine, charging them with extortion, conspiracy to defraud and discrimination under the Americans With Disabilities Act. “Patients have a constitutional right to life, liberty and the pursuit of happiness,” says Hoover. “How can you be happy when you’re in that much pain?”
Several doctors are now considering following her lead and filing lawsuits against their medical boards for discriminating against pain patients. As Frank McNiel puts it, “A lot of the people hurting are not the ones who live on Functional Street. You’ve had three surgeries, you’re on disability, you’re broke and living in a trailer. You don’t look like Mr. Yuppie, OK?” McNiel knows that if doctors want to treat pain patients, they may have to fight a court battle to do so.
In 1995 the Tennessee Board of Medical Examiners determined that McNiel had violated several provisions of the Tennessee Medical Practice Act and had a “co-dependent” relationship with his patients. The board labeled him an “impaired” physician, forced him to surrender his DEA registration and mandated he join a co-dependents’ support group. After a prolonged hearing process that resulted in more than $100,000 in legal bills (which his malpractice insurance paid until the verdict came in and he was fired), his attorney’s advice was simple: Put your head in the guillotine and let them drop the blade. However, McNiel appealed.
justice was served this past March. A state appeals court reversed and vacated the ruling, stating in its decision: “The conclusions of the board and its judgment are without necessary support of material and substantial evidence.” McNiel succeeded in blowing up the board’s opiophobic logic that when it comes to drugs, no proof is required: We would not accuse you if you were not guilty.
Despite his victory, McNiel still awaits a knock on his door: “I have a moral obligation not to ignore patients who come to me,” he says. “But I’m terrified every time I write a prescription.”
from the website drcnet.com
Chronic pain treatment
|One of the most serious problems in modern medicine is the under-treatment of patients in chronic pain.� More than 30 million patients suffer from chronic pain, and seven million of them cannot relieve their pain without opioids (narcotics), but only 4,000 doctors in the country are willing to prescribe them, according to the National Chronic Pain Outreach Association.� A New England Journal of Medicine editorial stated that 56 percent of cancer outpatients and 82 percent of AIDS outpatients were undertreated for pain, as were 50 percent of hospitalized patients with a range of conditions.Today’s massive denial of pain medication is a consequence of the social, regulatory and law enforcement climate created by the War on Drugs. Doctors can suffer loss of license or even incarceration, when the inevitable mistake of providing medicine to a dishonest patient who may be misusing or diverting medication occurs.� The climate has led to a situation in which most physicians are incorrectly trained in pain management and under- or non-treatment of pain is the norm.� Doctors who treat pain correctly typically must exceed the usual prescribed dosages, and in so doing draw the scrutiny of state medical boards and the U.S. Drug Enforcement Administration (DEA).� The DEA demands that doctors and pharmacies regularly provide them with records of every prescription for controlled substances that is written or filled.As Virginia physician William Hurwitz, whose case was featured on Sixty Minutes, explains, “The quasi-criminal liability imposed on physicians distorts clinical information and medical judgment, impedes the development of clinical expertise, undermines the ethical commitments necessary to medical practice, and leads to the abandonment, wasted lives, and deaths of patients with intractable pain.� Holding physicians liable for the misbehavior or dishonesty of their patients turns physicians into policemen and is, in principle, incompatible with effective medical care.”� Frank McNeil, a family practitioner in Knoxville, Tennessee, explains, “As doctors, we believe in people, but the government expects each of us to be an FBI unit. We’re supposed to trust no one.”The fate of pain patients in the “police state of medicine” is grim.� Day after day of constant torment drives many to depression or even suicide. Many patients receive enough medicine to provide relief for four hours out of the day, and have to decide which 20 hours of the day they will spend in extreme pain.� Frightened doctors sometimes “fire” patients, cutting them off from pain meds suddenly, thereby putting them at risk for shock or withdrawal.� And those patients receiving adequate prescriptions live in fear that their doctors could be put out of business by the government or frightened into cutting them off.� Former addicts as well as former prisoners are in the worst situation of all, being automatically suspect — but pain patients from these backgrounds need and deserve proper treatment nonetheless.
Pain Medication: Will I Become Addicted?
Addiction is a Real Risk, But Most Painkillers are Safe When Used Properly
From Marc Lallanilla
Created February 12, 2009
About.com Health’s Disease and Condition content is reviewed by the Medical Review Board
– Some pain medications have the potential for addiction, especially opioids, painkillers originally derived from the poppy plant. Despite this, most patients are able to use opioid pain medication without becoming addicted.Addiction to pain medication, however, is a serious problem worldwide. The Drug Abuse Warning Network (a program of the U.S. Department of Health and Human Services) noted that the opiate painkiller Oxycontin (oxycodone) was involved in more than 22,000 overdose-related emergency room (ER) visits in 2002 — an increase of 560% since 1995. Similarly, Vicodin (hydrocodone) was noted in more than 25,000 ER visits, and Duragesic (fentanyl) was involved in more than 1,500 ER visits, a staggering increase of 6,745% over 1995.
A number of factors have contributed to the growth in pain medication addiction. The availability of prescription drugs over the Internet has fueled an international trade in illicit drugs, including many counterfeit drugs. Doctors are also writing more prescriptions for painkillers: In 1991, about 40 million prescriptions for opioids were written; in 2007, that number jumped to 180 million.
The drugs most commonly abused fall into four general categories: stimulants like caffeine, nicotine and methamphetamine; sedatives like alcohol, benzodiazapenes and barbiturates; opioids (including heroin and opioid painkillers); and other drugs, like marijuana and hallucinogens.
Opioids are generally prescribed to be taken orally, but abusers often crush the pills into powder and snort or inject the powder. Because some opioids, like Oxycontin, were developed to be slow-release formulas, snorting or injecting opioids can result in a potentially deadly overdose.
Addiction to painkillers is not, however, the same as a physical dependence, which is common when such medication is prescribed on a long-term basis. Tolerance, when the body naturally adapts to the medication, can happen with some pain pills, which means higher doses will be required to experience the same level of pain relief. Addiction includes both physical dependence (tolerance and withdrawl) and out-of-control use.
The process by which a patient becomes addicted to prescription drugs is the subject of ongoing research. Use of the most commonly abused, prescribed medication, including opioids, causes a release of dopamine in the brain. Dopamine is a neurotransmitter that affects the brain’s processing (among other things) of reward-seeking behaviors and pleasure sensations. The brains of some people are more prone to addiction for reasons not yet well understood.
Patients’ personal histories also help reveal those who are at higher risk for abuse of prescription drugs, including painkillers. Patients with a history of alcohol or drug abuse, for example, are more likely to become addicted to prescribed pain medication. Younger patients, too, are more likely to become addicted, as are patients who work in a healthcare setting, where access to prescription drugs is easier.
There is some controversy over the long-term use of opioids for managing chronic pain, but there is also a growing consensus that for most patients, a well-managed treatment program of opioid use is appropriate.
To minimize the likelihood of painkiller addiction, doctors are advised to stay up-to-date on advances in pain management, to make thorough examinations and take in-depth patient histories — especially regarding substance abuse — and to develop a strategy for monitoring patients when prescribing opioid pain medication.
Patients, too, have an important role to play in preventing addiction to prescription pain medication. Complete honesty with the prescribing doctor — including disclosing information about past alcohol or drug abuse — is critical to successful pain management with opioids.
Patients and doctors alike, as well as friends and family members, should be aware of the signs of prescription drug abuse and addiction. These include getting multiple prescriptions from more than one doctor, “accidentally” misplacing prescriptions or losing pills, stealing or forging prescriptions, and taking higher doses of medication than prescribed.
Treatment for addiction to prescription pain medication includes managed withdrawal and detoxification, therapy such as behavioral counseling and groups like Narcotics Anonymous, and medications including methadone, buprenorphine and naloxone.
“NIDA InfoFacts: Prescription and Over-the-Counter Medications.” nida.nih.gov. Aug. 2008. National Institute on Drug Abuse, National Institutes of Health. 26 Jan. 2009 <http://www.nida.nih.gov/infofacts/PainMed.html>.
Tramadol is the pain medication I am on. I began on a low dose and titrated up. When it still was not relieving the pain, my rheumatologist upped the dosage. He actually doubled it. I am getting more of a relief at this point but the pain is still breaking through. In the interest of educating others about this disease, I have decided to include this information from the webpage rxlist.com. Happy reading!
What is tramadol (Ultram)?
Tramadol is a narcotic-like pain reliever.
Tramadol is used to treat moderate to severe pain. Tramadol extended-release is used to treat moderate to severe chronic pain when treatment is needed around the clock.
Tramadol may also be used for other purposes not listed in this medication guide.
Tramadol 50 mg-EON
round, white, imprinted with E 311
Tramadol 50 mg-MYL
round, white, imprinted with M, T7
Tramadol 50 mg-PAR
round, white, imprinted with G, TI 50
Tramadol 50 mg-PP
oval, white, imprinted with R 714
Tramadol 50 mg-TEV
oval, white, imprinted with 93, 58
Tramadol 50 mg-URL
round, white, imprinted with MP 717
Tramadol 50 mg-WAT
round, white, imprinted with 466, WATSON
Ultram 50 mg
oblong, white, imprinted with ULTRAM, 06 59
What are the possible side effects of tramadol (Ultram)?
Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.
Stop using tramadol and call your doctor at once if you have any of these serious side effects:
- seizure (convulsions);
- a red, blistering, peeling skin rash; or
- shallow breathing, weak pulse.
Less serious side effects may include:
- dizziness, drowsiness, weakness;
- nausea, vomiting, constipation, loss of appetite;
- blurred vision;
- flushing (redness, warmth, or tingly feeling); or
- sleep problems (insomnia).
This is not a complete list of side effects and others may occur. Tell your doctor about any unusual or bothersome side effect. You may report side effects to FDA at 1-800-FDA-1088.
What is the most important information I should know about tramadol (Ultram)?
You should not take tramadol if you have ever been addicted to drugs or alcohol.
Seizures (convulsions) have occurred in some people taking tramadol. You may be more likely to have a seizure while taking tramadol if you have a history of seizures or head injury, a metabolic disorder, or if you are taking certain medicines such as antidepressants, muscle relaxers, or medicine for nausea and vomiting.
Take tramadol exactly as it was prescribed for you. Do not take it in larger doses or for longer than recommended by your doctor. Do not take more than 300 milligrams of tramadol in one day.
Seek emergency medical attention if you think you have used too much of this medicine. A tramadol overdose can be fatal. Overdose symptoms of a tramadol overdose may include drowsiness, shallow breathing, slow heartbeat, extreme weakness, cold or clammy skin, feeling light-headed, fainting, or coma.
Tramadol may be habit-forming and should be used only by the person it was prescribed for. Tramadol should never be given to another person, especially someone who has a history of drug abuse or addiction. Keep the medication in a secure place where others cannot get to it.
Tramadol can cause side effects that may impair your thinking or reactions. Be careful if you drive or do anything that requires you to be awake and alert.
Do not stop using tramadol suddenly, or you could have unpleasant withdrawal symptoms such as anxiety, sweating, nausea, diarrhea, tremors, chills, hallucinations, trouble sleeping, or breathing problems. Talk to your doctor about how to avoid withdrawal symptoms when stopping the medication.
Do not crush the tramadol tablet. This medicine is for oral (by mouth) use only. Powder from a crushed tablet should not be inhaled or diluted with liquid and injected into the body. Using this medicine by inhalation or injection can cause life-threatening side effects, overdose, or death.
What should I discuss with my healthcare provider before taking tramadol (Ultram)?
You should not take tramadol if you have ever been addicted to drugs or alcohol, if you are currently intoxicated (drunk), or if you have recently used any of the following drugs:
- narcotic pain medicine;
- sedatives or tranquilizers (such as Valium);
- medicine for depression or anxiety;
- medicine for mental illness (such as bipolar disorder, schizophrenia); or
- street drugs.
Seizures have occurred in some people taking tramadol. Your risk of a seizure may be higher if you have any of these conditions:
- a history of drug or alcohol addiction;
- a history of epilepsy or other seizure disorder;
- a history of head injury;
- a metabolic disorder; or
- if you are also taking an antidepressant, muscle relaxer, or medicine for nausea and vomiting.
Talk with your doctor about your individual risk of having a seizure while taking tramadol.
Before taking tramadol, tell your doctor if you are allergic to any drugs, or if you have:
- kidney disease;
- liver disease;
- a stomach disorder; or
- a history of depression, mental illness, or suicide attempt.
If you have any of these conditions, you may need a dose adjustment or special tests to safely take tramadol.
FDA pregnancy category C. This medication may be harmful to an unborn baby. Tramadol may also cause serious or fatal side effects in a newborn if the mother uses the medication during pregnancy or labor. Tell your doctor if you are pregnant or plan to become pregnant during treatment.
Tramadol can pass into breast milk and may harm a nursing baby. Do not use this medication without telling your doctor if you are breast-feeding a baby.
Tramadol should not be given to a child younger than 18 years of age.
How should I take tramadol (Ultram)?
Take tramadol exactly as it was prescribed for you. Do not take it in larger doses or for longer than recommended by your doctor. Follow the directions on your prescription label. Do not take more than 300 milligrams of tramadol in one day.
Take this medication with a full glass of water.
Tramadol can be taken with or without food, but take it the same way each time.
Do not crush the tramadol tablet. This medicine is for oral (by mouth) use only. Powder from a crushed tablet should not be inhaled or diluted with liquid and injected into the body. Using this medicine by inhalation or injection can cause life-threatening side effects, overdose, or death.
Do not crush, chew, break, or open a controlled-release, delayed-release, or extended-release tablet or capsule. Swallow the pill whole. Breaking or opening the pill may cause too much of the drug to be released at one time.
If you use the tramadol extended-release tablet, the tablet shell may pass into your stools (bowel movements). This is normal and does not mean that you are not receiving enough of the medicine.
Tramadol may be habit-forming. Tell your doctor if you feel the medicine is not working as well in relieving your pain. Do not change your dose without talking to your doctor.
Do not stop using tramadol suddenly, or you could have unpleasant withdrawal symptoms such as anxiety, sweating, nausea, diarrhea, tremors, chills, hallucinations, trouble sleeping, or breathing problems. Talk to your doctor about how to avoid withdrawal symptoms when stopping the medication.
Store tramadol at room temperature away from moisture and heat.
Keep track of how many pills have been used from each new bottle of this medicine. Tramadol is a drug of abuse and you should be aware if any person in the household is using this medicine improperly or without a prescription
What happens if I miss a dose (Ultram)?
Take the missed dose as soon as you remember. If it is almost time for your next dose, skip the missed dose and take the medicine at the next regularly scheduled time. Do not take extra medicine to make up the missed dose.
What happens if I overdose (Ultram)?
Seek emergency medical attention if you think you have used too much of this medicine. A tramadol overdose can be fatal.
Overdose symptoms may include drowsiness, shallow breathing, slow heartbeat, extreme weakness, cold or clammy skin, feeling light-headed, fainting, or coma.
What should I avoid while taking tramadol (Ultram)?
Do not drink alcohol while you are taking tramadol. Alcohol may cause a dangerous decrease in your breathing when used together with tramadol.
Cold or allergy medicine, narcotic pain medicine, sleeping pills, muscle relaxers, and medicine for seizures, depression or anxiety can add to sleepiness caused by tramadol. Tell your doctor if you regularly use any of these other medicines.
Tramadol can cause side effects that may impair your thinking or reactions. Be careful if you drive or do anything that requires you to be awake and alert.
What other drugs will affect tramadol (Ultram)?
You may be more likely to have a seizure (convulsions) if you take tramadol while you are using certain other medicines. Do not take tramadol without telling your doctor if you also use any of the following medications:
- an MAO inhibitor such as isocarboxazid (Marplan), tranylcypromine (Parnate), phenelzine (Nardil), or selegiline (Eldepryl, Emsam); or
- an antidepressant such as amitriptyline (Elavil), citalopram (Celexa), clomipramine (Anafranil), desipramine (Norpramin), escitalopram (Lexapro), fluoxetine (Prozac, Sarafem), fluvoxamine (Luvox), imipramine (Tofranil), nortriptyline (Pamelor); paroxetine (Paxil), or sertraline (Zoloft).
Before taking tramadol, tell your doctor if you also use:
- carbamazepine (Tegretol);
- warfarin (Coumadin);
- digoxin (Lanoxin, Lanoxicaps);
- ketoconazole (Nizoral);
- erythromycin (E-Mycin, E.E.S., Ery-Tab);
- rifampin (Rifadin, Rimactane, Rifater);
- St. John’s wort;
- quinidine (Quinaglute, Quinadex, Cardioquin, Quinora); or
- drugs that make you sleepy (such as cold medicine, other pain medications, muscle relaxants, and medicine for seizures, depression or anxiety).
This list is not complete and there may be other drugs that can interact with tramadol. Tell your doctor about all the prescription and over-the-counter medications you use. This includes vitamins, minerals, herbal products, and drugs prescribed by other doctors. Do not start using a new medication without telling your doctor.
Where can I get more information?
Your pharmacist can provide more information about tramadol.
Lupus is hard to diagnose, but in this article, you can find the information that helps doctors to give a definitive diagnosis.
This information was obtained from the Lupus Foundation of America’s web site. You can visit it at www.lupus.org for more information. Thanks!
How is Lupus Diagnosed
In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from foreign invaders. When you have lupus, your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues, so autoantibodies (auto means self and anti means against: “against self”) are made that damage and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
What Is My Doctor Looking For?
A doctor who is considering the possibility of lupus will look for signs of inflammation. The signs of inflammation are pain, heat, redness, swelling, and loss of function at a particular place in the body. Inflammation can occur on the inside of your body (your kidneys or heart, for example), on the outside (your skin), or both.
However, there are many challenges in confirming that a person has lupus and not some other disease. Lupus is known as “the great imitator,” because its symptoms mimic many other illnesses. Also, lupus symptoms can be unclear, can come and go, and can change. Therefore, a lupus diagnosis is made by a careful review of:
- your current symptoms
- your laboratory test results
- your medical history
- the medical history of your close family members (grandparents, parents, brothers and sisters, aunts, uncles, cousins)
All of this information may be necessary for a doctor to make a diagnosis of lupus because, for a number of reasons, laboratory tests alone cannot give a definite “yes” or “no” answer.
- No single laboratory test can determine whether a person has lupus.
- Test results that suggest lupus can be due to other illnesses, or can even be seen in healthy people.
- A test result may be positive one time and negative another time.
- Different laboratories may produce different test results.
Frequently Asked Questions
Is there a test for systemic lupus?
There is not a single diagnostic test for systemic lupus. A variety of laboratory tests are used to detect physical changes or conditions in your body that can occur with lupus. Each test result adds more information to the picture your doctor is forming of your illness.
What kind of doctor can diagnose systemic lupus?
If multiple criteria are present simultaneously, the diagnosis may be made by any physician (Family Practitioner, Internist, or Pediatrician). If however, as is often the case, symptoms develop gradually over time, the diagnosis may not be as obvious and consultation with a rheumatologist may be needed.
Where is the BEST place to go for diagnosis and treatment of lupus?
There is no one single recognized center of excellence for the treatment and diagnosis of lupus in the United States today. The Lupus Foundation of America has no mechanism by which it can rate either hospitals or physicians. The general recommendation is to find a physician that is affiliated with a medical school — a university hospital for example. These health care institutions may have faculty on staff who are involved in lupus research, and are generally the most up-to-date on the latest advances in diagnosis and treatment of lupus. These are generally regarded as very good places to go for the diagnosis and treatment of lupus. Certainly the health care institutions with established reputations fit this description.