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
This information is from the NINDS website.
NINDS Neurological Sequelae Of Lupus Information Page
Synonym(s): Lupus – Neurological Sequelae, Systemic Lupus Erythematosus
Table of Contents (click to jump to sections)
Is there any treatment?
What is the prognosis?
What research is being done?
Additional resources from MedlinePlus
What are Neurological Sequelae Of Lupus?
Lupus (also called systemic lupus erythematosus) is a disorder of the immune system. Normally, the immune system protects the body against invading infections and cancers. In lupus, the immune system is over-active and produces increased amounts of abnormal antibodies that attack the body’s tissues and organs. Lupus can affect many parts of the body, including the joints, skin, kidneys, lungs, heart, nervous system, and blood vessels. The signs and symptoms of lupus differ from person to person; the disease can range from mild to life threatening.
Initial symptoms of lupus may begin with a fever, vascular headaches, epilepsy, or psychoses. A striking feature of lupus is a butterfly shaped rash over the cheeks. In addition to headache, lupus can cause other neurological disorders, such as mild cognitive dysfunction, organic brain syndrome, peripheral neuropathies, sensory neuropathy, psychological problems (including personality changes, paranoia, mania, and schizophrenia), seizures, transverse myelitis, and paralysis and stroke.
Is there any treatment?
What is the prognosis?
What research is being done?
Test Yourself for Lupus
1. Have you ever had stiff, tender and swollen joints that feel worse in the morning?
2. Have you ever had an unexplained fever higher than 100 degrees F for more than a few days that was not due to an infection?
3. Have you ever had extreme fatigue and weakness for days or weeks at a time, even after plenty of sleep?
4. Has your skin broken out after being in the sun, but its not sunburn?
6.Have you ever developed irritation or dryness in your eyes or mouth for more than a few weeks?
7. Have you ever been told that you have protein in your urine?
8. Have you ever felt chest pain while taking deep breaths?
9. Have your fingers and/or toes ever become pale or red or blue or felt numb or painful?
10. Have you ever had a stroke or heart attack?
11. Have you ever had blood clotting problems or a miscarriage?
12. Have you ever had redness or a rash across your nose or cheeks in the shape of a butterfly?
13. Have you ever had a seizure or convusion?
14. Have you ever had an unexplained confusion that lasted for more than an hour?
15. Have you had sores in your mouth and/or nose that lasted for more than five days?
16. Have you ever had swelling in your legs and/or ankles on both sides at the same time?
17. Have you had sudden, unexplained hair loss?
18. Have you had unexplained weight loss or abdominal pain that is worse when you breathe?
If your answer was “yes” to at least three of these questions, the Lupus Foundation of America suggests that you consult with your doctor and discuss any questions that you may have about lupus.
To be honest, last year I did not walk but still attended the event. This year is not looking too good for me walking either, but I will still tell you why I attend the walk. When I say I walk, I mean attending the event, since walking is not an option due to the disease activity right now. Please read…
I walk for my family, my children and grandchildren. They are at risk of developing Lupus because of me. I walk so they will not have to suffer and feel the pain of joints hurting and rashes appearing and organs inflamed. I walk for their future being pain free and healthy. I do not want this disease to impact them as it has me.
I walk for those who are unable to walk the walk anymore. They are fighting the best they can to survive each day with a smile on their face and joy in their heart. They do not take each day for granted but enjoy each day to the fullest because they have learned to appreciate each day they are given to survive. They are the warriors in this disease.
I walk for those who have passed on. This year alone, I have known of at least ten people who this disease has overtaken. There are many more that I do not know, but the sad fact is that this disease will consume many more loving people before their time. Those who have passed on are the inspiration to me to keep going, and not let the disease win if I can help it.
I walk for those not yet diagnosed. So many times it takes YEARS before a diagnosis can be made. With more awareness and assistance, we hope to cut this time down so patients can get the life saving treatment they need sooner rather than later. In some, this difference can mean life or death. It is vital to shorten this time!
I walk for those in such pain that they find daily living a challenge. Why must we feel bad when asking medical professionals for help in pain management? I truly believe that if more men had this disease, pain management would not be an issue. More women have this disease and as such, pain management can de a daunting challenge. We deserve to live as pain free as we can. We are not asking for something to get high. We are asking for medications that can help us to function on a daily basis as normally as possible. Why do we feel like drug addicts when we ask for help? Medical professionals need to understand that this is a chronic, incurable disease that can come and go and when we are in need of help, please give us the help we need. It is a small thing to ask for yet it is often a challenge because of the laws and the feelings of each doctor.
Finally, I walk so that others can be educated on this disease. Awareness is a key to funding, earlier diagnosis, treatment, and research. The more people realize that lupus is out here and more prolific that many diseases that have a higher profile, the more help we will get. Please take a few moments of your time and read about lupus. Talk about lupus. Join the LFA. Become proactive. For those of us with lupus, we need your help to get the word out. The normal people out there are the ones who can take the ball and run with it. They have the energy and time to be able to help those of us who can’t. Please go to
www.lfa.org and learn more about it.
If we can help just one person, will that not make everyone feel better? Join our cause and see what one person can do. The walk is just the tip of the iceberg.
On a personal note, I am proud of my granddaughter, Audrey, who has walked the walk since she was 3 years old. She WALKS and has raised money each year to help her meemaw. That, my friends, is love.
Today had an auspicious start for me. If you have lupus you will understand this. I could not get out of bed. I made it to the bathroom and barely made it back to bed. Sounds ridiculous? It is my reality some days and this was one of them. I ended up sleeping until noon. I made myself get up and into my chair before my granddaughter got here. I don’t want the grandkids to worry about their meemaw so I pasted on my smiling face and pretended I was fine. After she left, I basically collapsed into my chair and have been here ever since. Yes, I get up to do some things but I tell you, this fatigue is for the birds. Have you ever been walking in sand and find you struggle with energy? Imagine that you are on a beautiful beach and in order to walk, you have to sink in a few inches into the sand and then you can walk. Well, that would be easy compared to how I feel today.
I knew I might have the rebound effect from the busy week I had last week. I know the signs, I had them all, and yet I push it out of my mind thinking that this time it will not happen. WRONG. It has happened and while I can pretend for a short time, the reality is that we did not get to the camper tonight (as planned) and instead we are home and while hubs sleeps, I am awake, in part due to the sleeping earlier in the day and in part due to the pain and other associated issues that come when I over do it.
So, this is my venting for today. I know there are those who think I should not discuss the incidentals of my life and how the disease affects me. However, I find it helps me to pour it out on here and then I can relax more and go about the business of life. If that offends some people, then you do not have to read it. For me, it releases the stress and brings a sort of peace. For that, I am grateful.
- What to Expect From Life With Systemic Lupus (everydayhealth.com)
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):
- 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:
- the antibody-producing cells of the immune system
- blood cells
- hair cells
- gonadal (sex) cells.
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.
- Drugs Used to Treat Lupus (brighthub.com)
This information is from Lupus Foundation of America‘s website and is about how lupus can affect your cardipulmonary systems. This is essential reading for those with lupus as it can present itself at any given time. As always, talk to your own doctor about your disease and problems associated with it.
The heart and lungs are frequently affected in people with systemic lupus erythematosus (SLE). Complications in these organs can cause a variety of problems, ranging from mild to serious or even life-threatening. These complications are known as cardiopulmonary (cardio = heart; pulmonary = lung).
It is very important to know the differences between cardiopulmonary complications and non-lupus related problems. The medical examination and laboratory and other tests will help to determine the cause of the problem so appropriate therapy can be used.
Types of Heart or Lung Involvement in Lupus
When investigating a person with cardiopulmonary symptoms, a number of possible causes must be considered. Some problems that can occur in SLE are:
Other possible cardiopulmonary problems
Heart and lung problems that are not necessarily lupus-related include:
Cardiac (Heart) Involvement
Lupus can involve all parts of the heart:
Pericarditis, or inflammation of the sac around the heart, is the most common heart involvement in people with lupus. This condition occurs when antigen-antibody complexes-also known as immune complexes-are made during active lupus and cause inflammation within the pericardium.
Symptoms of pericarditis
Pericarditis can occur in conditions other than lupus, therefore the cause must be determined before treatment begins. To help diagnose pericarditis, these tests may be ordered:
When lupus causes inflammation of the tissue of the heart, myocarditis occurs. However, serious heart muscle disease is not common in SLE.
Symptoms of myocarditis
Myocarditis is often seen with inflammation of other muscles in the body, and this condition can lead to tissue damage that replaces heart tissue with scar tissue.
Treatment usually includes corticosteroids such as prednisone. Immunosuppressive drugs such as Cytoxan (cyclophosphamide) and Imuran (azathioprine) may be added if the inflammation is not completely controlled with corticosteroids.
When lupus causes inflammation of the lining of the inside of the heart, endocarditis occurs.
Symptoms of endocarditis
Coronary artery disease
The coronary arteries deliver blood and oxygen to the heart muscle and are vital to the heart’s pumping function. In people with lupus, these arteries can become prematurely narrowed, causing coronary artery disease.
Studies suggest that people with lupus are more likely to develop premature atherosclerosis if they are on corticosteroids (prednisone) or have kidney involvement.
This blockage can be due to:
Symptoms of coronary artery disease
In addition, heart damage can develop from inflammation in active lupus or from medications.
Diagnosing coronary artery disease
Early and accurate diagnosis, combined with aggressive therapy to reduce organ damage, is crucial in order to minimize permanent heart damage. Typical tests include:
Treating coronary artery disease
Treatment of cardiac problems must be individualized for each person and for each problem. However, prevention is the primary treatment of coronary artery disease.
These are three important factors in preventing heart attacks in people with lupus:
Pulmonary (Lung) Involvement
The wide range of pulmonary manifestations (symptoms) associated with lupus needs prompt evaluation and close monitoring.
Diagnostic tools can include:
While lupus can affect the lungs in many ways, pleuritis (pleurisy) is the most common pulmonary manifestation.
The pleura is a membrane that covers the outside of the lung and the inside of the chest cavity. It produces a small amount of fluid to lubricate the space between the lung and the chest wall. As lupus activity generates immune complexes, they initiate an inflammatory response at this membrane, a condition called pleuritis.
Symptoms of pleuritis
Sometimes an excessive amount of fluid builds up in the pleural space between the lung and the chest wall. This is called a pleural effusion and occurs less often then pleuritis.
Diagnosing pleural effusion
If the effusion is large enough, it can be seen on a chest x-ray. Since infection or conditions other than lupus can cause pleural effusions, the physician may need to take a sample of the fluid and perform tests to help determine its cause.
Treating pleural effusion
Pleural effusions will usually respond to these medications:
Pleural effusions also may clear by themselves with time.
Pneumonitis is inflammation within the lung tissue. Infection is the most common cause of pneumonitis in people with lupus. Bacteria, virus, or fungi are organisms that can cause infection in the lung. Sometimes pneumonitis may occur without infection and is then called non-infectious pneumonitis.
Symptoms of pneumonitis
Since both forms of pneumonitis have the same symptoms, the patient is assumed to have an infection until proven otherwise. The diagnosis of pneumonitis requires:
To determine if infection is the cause of the pneumonitis the physician may also need to perform:
Treatment initially includes a course of antibiotics. If laboratory and other diagnostic tests show no proof of infection, then the diagnosis is likely lupus pneumonitis.
This non-infectious pneumonitis is treated with high doses of corticosteroids. Immunosuppressive drugs such as Imuran (azathioprine) may be added if the inflammation is not controlled with corticosteroids.
Chronic diffuse interstitial lung disease
Chronic diffuse (widespread) interstitial lung disease is relatively uncommon in people with SLE. Chronic interstitial lung disease scars the lung. This scarred tissue acts as a barrier to the oxygen that normally moves easily from the lung into the blood.
Besides lupus, there are other reasons for this condition. Correct identification of the cause is necessary in order to chose the proper treatment.
Symptoms of chronic diffuse interstitial lung disease
Diagnosing chronic diffuse interstitial lung disease
To determine the cause, special procedures are required, such as:
Treating chronic diffuse interstitial lung disease
Chronic lupus interstitial lung disease is primarily treated with corticosteroids, with varying results. In general, the lung function can be stabilized with treatment.
The progression of chronic interstitial lung disease can be measured with several tests that assess disease activity and the person’s response to therapy. These include:
I got my first issue of the “Lupus Now” magazine today in the mail and read it cover to cover. It was a great read all the way through! I found an interesting tidbit that I can relate to most days. It says in the magazine that lupies are more prone to being unsteady on their feet and are rather clutzy because of this instability. Wow! They know me!
Not long after reading this magazine, I found myself at a park with six of my grands. My daughter, who is an accomplished photographer (family only for now) was taking pics of them in various places and poses, individually and together. She yelled at me to come over to this tree she was working near with all six of the kids when I found myself literally tripping over nothing and falling hard to the ground.
Needless to say, I am bruised tonight. It could have been worse, much worse. You see I have osteoporosis in my spine from the years of long term high dose steroid use in combatting the lupus. It brought home to me that I really do have to be more careful because in a blink, I could sustain a serious injury and be totally out of commission for a long time.
Ok, it can happen to anyone. However, it is ironic to me that not long after reading that article, it happened to me. Go figure.
On the positive side, the pictures turned out great! Who needs Olan Mills when I have a capable daughter with an artistic flair and she takes much better pictures than most. If you have my fb page, you will see some of her work.