Personally

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Well, I guess it is time for me to add a personal post. Times are getting better, then worse. Each day has been a challenge in one way or another lately. I have not disclosed the reasons why to date but feel I need to do so now, if only to allow me to shake the negatives by putting them out there and dealing with them more fully.

I have been dealing with a series of tests from several doctors and the results are finally coming in. I had one test come back good. Yay me! However, two other tests came back with issues. As a result, I have had two more tests done to further review the initial results. I still have not heard from three other tests yet.

I still do not think I want to disclose the exact things that are being checked, as it could be a bunch of nothing to worry about. That being said, it is worrying just to have abnormal results and have to take more tests. I have been tied up in this drama of not knowing now for a few weeks and it can wear on the already sick body. It has done exactly that for me.

To illustrate, last night I was in bed and woke up to pain. Yes, the pain woke me up and forced me to sit up and try to get it to stop. I only had over the counter NSAIDS to take, and believe me, they did not help much. I found myself crying and in pain and wishing I could just go back to sleep.

I am going to see about being more proactive in my care again as this pain is crazy to endure when I should not have to. I could be a druggie ont he streets and get the relief I need but no, I am an honest person who cannot seem to get the pain relief I need. Oh well, you can read my tirade on that in the post from some time ago called “Police Mentality and Pain Control“.

I will share what is going on when I know more about it myself. Until then, I apologize for not posting and being a bit on the selfish side. I am just overwhelmed and hope these things get resolved sooner than later. Thanks for letting me spout off and get it out there! It really helps me to be able to vent on this blog and then feel better.

Lupus and Cancer Risks

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This was an interesting read I found from Johns Hopkins website.  I had never heard of an increased risk of this before. Please read and discuss with your own doctors your chances of this.

Lupus and Cancer

Systemic lupus erythematosus (“lupus” or “SLE”) and other autoimmune diseases are linked to an increased risk of certain types of cancer. Specifically, lupus patients may experience an elevated risk of lymphoma and other cancers, such as cancer of the cervix. Researchers have elucidated certain connections between lupus and cancer. For example, it is widely accepted that immunosuppressive medications, such as azathioprine (Imuran) and mycophenolate mofetil (Cellcept) contribute to elevated cancer risk. However, one of the largest studies to investigate this connection suggests that the risk of cancer is actually greatest during the earlier stages of lupus, indicating that exposure to immunosuppressive therapy is not the only link between lupus and cancer. Physicians do not yet understand the precise relationship between lupus and cancer.

Lupus and lymphoma

Studies show an increased risk of both Hodgkin’s and non-Hodgkin lymphoma in lupus patients. It is believed that the elevated risk of lymphoma results from the disease process of lupus—specifically the overstimulation of B-cells coupled with defects in the immune system’s surveillance system—and not just from medications or other associated risk factors. Some suggest that immunosuppressive medications also increase the risk of lymphoma and other blood cancers, especially 5 or more years after taking the drug. In addition, people with Sjogren’s syndrome, which is relatively common in lupus, experience an even greater elevation of lymphoma risk, suggesting that lymphoma in lupus patients may also be linked to this condition.

Lupus and breast cancer

Some data indicate that women with lupus experience an increased risk of breast cancer. Increased estrogen levels might contribute to a higher risk of breast cancer in women with lupus.

Lupus and lung cancer

Lung cancer is about 1.4 times more common in people with lupus than in the general population. Interestingly, people with lupus and lung cancer are more likely to experience rare types of lung cancer. However, like the general population, many of the people with lupus who develop lung cancer are smokers. In fact, 85% of lung cancer is caused by tobacco. It is very important that people with lupus do not smoke. Smoking not only increases the chance of developing lung cancer, it also ups the risk for cardiovascular disease (which is also markedly increased in people with lupus), and prevents lupus drugs like Plaquenil from working properly. If you need help quitting, talk to your doctor. S/he can help you find the most effective strategy to curb your smoking habit.

Lupus and cervical cancer

Certain studies have shown an elevated risk of cervical cancer and abnormal PAP tests in women with lupus. One study linked the increased incidence of abnormal PAP tests with histories of sexually transmitted disease, contraceptive use, and immunosuppressive medications. Some physicians suggest that either the use of immunosuppressives or flawed inherent immunity lead to a decrease in the ability of lupus patients to fight off human papilloma virus (HPV), a virus associated with cervical cancer. [Gardasil (the HPV vaccine)  is recommended for young women with lupus to reduce the risk of later cervical cancer.] However, like much of our knowledge of cancer in lupus, these connections are not fully known or understood.

Lupus and endometrial cancer

New evidence suggests that lupus patients also experience an elevated incidence of endometrial cancer, although the cause for this risk is unknown.

NSAIDs and cancer

It has been found that people with Rheumatoid Arthritis, another autoimmune disease, experience a lower incidence of colorectal cancer than the general population. Although the precise cause of this phenomenon is unknown, it has been attributed to the long-term (10 years or more) use of non-steroidal anti-inflammatory drugs (NSAIDS) and aspirin. Evidence has also been found that long-term aspirin and NSAID use may also reduce the risk of colorectal, breast, and prostate cancer in the general population. It is likely that this benefit also holds for people with lupus, but that does not mean that one should begin taking aspirin and NSAIDs for this reason. In fact, long term NSAID use can increase cardiovascular disease. Therefore, you should only take medications as directed by your physician.

The importance of regular cancer screenings

Despite the increased risk of cancer in people with lupus, studies show that lupus patients are actually equally or even less likely than the general population to undergo cancer screenings. Thus, it is very important that you speak with your doctor about lupus and cancer to ensure that you see the appropriate physicians for cancer screenings as often as recommended.

Healthy habits

Certain risk factors, such as smoking, obesity, hormone replacement therapy, and exposure to immunosuppressive medications, increase the chance that an individual will develop cancer. Therefore, it is also important that you practice healthy lifestyle habits. Obesity also increases the risk of certain cancers, so try to eat foods that help you maintain a healthy weight.

Sunlight causes lupus flares and also increases the risk of skin cancer. People with lupus should avoid the sun whenever possible. If you need to be outdoors, wear sunscreen with an SPF of 85 or greater and be sure that your sunscreen contains Helioplex to protect you from both UV-A and UV-B rays.

Sources

  • Gayed M, Bernatsky S, Ramsey-Goldman R, Clarke A, Gordon C. Lupus and cancer. Lupus. 209; 18(6); 479-85.

Lupus Pain

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I found this online at the website www.healingwell.com. It is written by a nurse and fellow lupus patient and is informative. Enjoy!

Chronic Pain in Lupus

by Karyn Moran Holton

Chronic pain. Pain that goes from bad to worse to unbearable. Pain that lives with you every day of your life, never ceasing, not even long enough to get a night’s sleep, is one of the worst things about having lupus.

Because lupus primarily affects women, I found it interesting that the National Institute of Health noted that women report more severe and chronic pain than men, and urged doctors to factor sex into diagnosing, treating, and researching chronic pain management. (JAMA, 280:120-124. 1988)

The NIH Revitalization Act of 1993 mandated that women and minorities be included in clinical research. Previously, pain research had been male-oriented because of (get this) “The alleged rationale has been that the estrus cycle in women would confuse the results.”

It may be true that women react to pain differently than men do. Dr. Lesche of NIH states, “Pain may arise in women with differences in anatomy or physiology of neural systems, perception of pain, and the cognitive and emotional ways of dealing with pain.” If pain may arise in women, then more research is needed focusing solely on chronic pain in women! Simply ignoring women’s pain is not a viable solution, and more therapies for the relief of chronic pain must be found.

The first line of defense against chronic pain in inflammatory diseases like lupus and arthritis has always been pharmacological. Non-steroidal anti-inflammatories (also called NSAIDs) such as aspirin and ibuprofen (Advil or Motrin) have been used to treat mild cases with success. For more intense pain that does not respond to NSAIDs, narcotic analgesics, such as demerol and morphine may be used. However, for some patients with chronic pain, the addictive effects of narcotics may be too much for them to be used on a long-term basis.

This is where alternative therapies have stepped in. Pain relieving techniques like hypnosis and magnetic stimulation therapy have given patients a non-medicinal alternative that may be more beneficial in the long term.

Dr. P. Logue, of Duke University Medical Center‘s Department of Psychiatry and Behavioral Sciences, made some statements regarding hypnosis: “It is known that a patient’s cognitive and emotional state can influence their physiological system. Changes in their physiological state can affect their overall function. This intimate mind/body relationship can be used to treat painful states via hypnosis. Enhancing the nervous systems inhibitory process can modify pain…Hypnosis can induce a state of relaxation, calmness and peacefulness, even in the midst of external distress. This temporary state of calm can effectively reduce a patient’s subjective experience of pain.” Dr. Logue also stated, “Why would any clinician want to use a procedure that must be explained and justified to the ‘outside’ world? Because it works. Not always in a spectacular fashion, not with every patient, and not with every condition, but it does work.” (NC Medical Journal, 53[3]:176-179, 1988.). In NIH studies, 75-80% of patients had a positive reaction to hypnosis.

Another fairly new type of therapy for chronic pain is magnetic stimulation. According to Dr. J. Pujol of the Magnetic Resonance Center of Pedralbas in Spain, a study using magnetic stimulation to localized pain reduced pain 29 (out of 101) points in patients. In a sham situation, patient’s pain was only reduced 8 points. In a test using a sham stimulation, and then using magnetic stimulation, patient’s perception of pain dropped 30 points after magnetic stimulation. The effects can last up to a few days, as opposed to a few hours for medicinal therapies. (NeuroReport 9[8] 1745-1748, 1998.)

Perception of pain is as individual as each person. What works for one person may not work for another. It may be helpful for the person living with chronic pain to experiment with different therapies. It is advisable to start with the least invasive, or least expensive, therapies and go on from there. Try using ice packs before taking medication, and try medication before seeing a surgeon. The main thing to remember is that no one needs to suffer needlessly, and to keep looking until you find the pain relief that works for you!

© 1999 Karyn Moran Holton


Karyn Moran Holton is a nurse who has been diagnosed with lupus for the past 3 years, and has spent most of that time trying to raise awareness about lupus and other under-appreciated autoimmune diseases.

Lupus and Overlapping Diseases

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I have noticed in my own experience and others, that when we are diagnosed with one autoimmune disease, sometimes we develop more that will overlap with our original diagnosis. For instance, I have SLE or lupus, and overlapping that I have fibromyalgia, IBS, corneal erosion, raynauds and a host of other autoimmune diseases. I found this information on the website, www.lupus.org from the Lupus Foundation of America. It makes an interesting read…

Lupus and Overlap

Connective Tissue Disease And Overlap Syndromes

The connective tissue diseases are a family of closely related disorders. They include: rheumatoid arthritis (RA), systemic lupus erythematosus (SLE or lupus), polymyositis-dermatomyositis (PM-DM), systemic sclerosis (SSc or scleroderma), Sjogren’s syndrome (SS) and various forms of vasculitis.

These diseases have a number of common features:

  1. They affect women much more frequently than men.
  2. They are “multisystem” diseases, capable of affecting the function of many organs.
  3. They “overlap” with one another, sharing certain clinical symptoms, signs, and laboratory abnormalities.
  4. Blood vessels are the most common target of injury in all of these diseases.
  5. The immune system is abnormal and accounts, at least in part, for the observed tissue damage.

Although lupus most often occurs alone, many people with lupus also have symptoms characteristic of one or more of the other connective tissue diseases. In this circumstance, a physician may use the term “overlap” to describe the illness. There are several well-recognized overlaps that may affect people with lupus.

Lupus and Rheumatoid Arthritis

In lupus, joint pain (arthralgia) is common. Joint swelling (arthritis) may be present in some cases, but the majority of those with lupus experience joint pain without swelling or only intermittent swelling. In rheumatoid arthritis (RA), joint swelling is always present and pain is common but less prominent. Because rheumatoid arthritis is more likely than lupus to cause joint deformities and bone destruction, joint replacement or reconstructive surgery is more often required in RA than in SLE. If a person with lupus develops severe arthritis with joint deformities, he/she should be considered to have rheumatoid-like arthritis. In some instances, the physician might have reason to believe that both diseases — SLE and RA — have occurred in the same person. When arthritis develops in the course of lupus, treatment with non-steroidal anti-inflammatory drugs (NSAIDs), low doses of cortisone, and the antimalarial drug hydroxychloroquine (Plaquenil) are usually helpful. People with lupus who have typical rheumatoid arthritis are prescribed the standard forms of RA treatment. These include methotrexate, sulfasalazine and in some cases, more potent drugs to suppress joint inflammation.

Myositis

Many persons with lupus have muscle pain (myalgia), but a few have muscle weakness due to inflammation (myositis). The “muscle weakness” that people with lupus report is most commonly due to fatigue or high doses of cortisone. In polymyositis-dermatomyositis, the primary problem is muscle weakness due to muscle inflammation. In myositis, weakness especially affects the hips (inability to rise from a chair or toilet seat, or to climb stairs unassisted) and shoulders (inability to lift a weight onto a high shelf or comb one’s hair). Typically, there is little or no pain associated with the weakness. People with myositis have increased blood levels of creatine kinase (CK, a substance that leaks from injured muscle), abnormal electrical activity of muscles (seen in an electromyogram, or EMG), and muscle cell degeneration and inflammation that is found in a muscle biopsy. Prednisone or other cortisone-like drugs are most often recommended for the treatment of myositis, and may be used in combination with other immune-suppressing drugs. Cortisone itself, in high doses, may actually cause muscle weakness of the hips and shoulders, very similar to what occurs in myositis. But in this condition, called “steroid myopathy,” the CK, EMG, and the muscle biopsy do not suggest inflammation, and recovery of strength promptly follows reduction of the cortisone dose.

Lupus and Scleroderma

The hallmark of scleroderma (SSc) is thickened skin (sclero=hard, derma=skin) which affects the fingers, and often the hands, forearms, feet, and face. If skin thickening is widespread, it may extend to the upper arms, thighs, chest, and abdomen. These changes are due to the excessive production and uncontrolled laydown of collagen, the substance normally present in scar tissue. The variety of skin rashes seen in lupus are due to inflammation, rather than fibrosis. These include the facial “butterfly” rash and photosensitivity reaction (rash, hives or blisters immediately after exposure to sunlight or other sources of ultraviolet light). The latter is limited to the skin surfaces exposed. An exception is discoid lupus, which consists of spots or patches of rash, mostly in sun exposed areas (face, ears, extremities), which typically cause scarring and skin pigment changes. The appearance of scleroderma and discoid lupus are entirely different, and should be easily distinguished from one another by your physician.

Other features less common in SLE than in SSc include: scarring of the lower portions of the lung (pulmonary fibrosis); difficulty in swallowing solid foods such as bread or meat; and heartburn or indigestion from stomach acid “refluxing” (coming back up) into the esophagus. Difficulty swallowing and reflux are due to sluggish and uncoordinated motion of the muscle layer of the esophagus (esophageal dysmotility). Scleroderma often leads to finger and hand deformities as well, due to the combination of skin thickening, arthritis, tendinitis and tenosynovitis (inflammation and scarring of tendons and their lining tissues). These processes ultimately result in limited movement of the fingers. Raynaud’s phenomenon — when fingers turn blue or white with cold — occurs in 95 percent of people with scleroderma and in 40 percent of persons with lupus.

The primary treatment approaches to SSc are quite different from those for lupus. Therefore, treatment for scleroderma-like problems in people with lupus should be individualized and directed at the particular problems present at any given time.

Lupus and Overlap

Mixed Connective Tissue Disease

Some individuals have symptoms and signs of three connective tissue diseases, i.e., lupus, polymyositis-dermatomyositis, and scleroderma. At any given time, the combination of problems encountered by the patient may vary considerably, from no active disease to features of one, two, or all three of these conditions at the same time. These persons often (but not always) have one specific blood antibody in their blood (anti-U1RNP antibody) but not the other antibodies commonly associated with SLE, SSc, or PM-DM. Whether this is an entirely separate disease, or a situation in which one person has three diseases, remains uncertain. However, the presence of a single blood antibody is a strong point in favor of a distinctive disease. As in the other circumstances mentioned above, treatment should be individualized and directed at the particular problems present at any given time.

Sjogren’s Syndrome

Henrik Sjögren was a Swedish ophthalmologist and the first to recognize that dry eyes and dry mouth were often found in people with connective tissue diseases. These symptoms are caused by the accumulation of immune system cells (lymphocytes) in and around tear and saliva producing glands. The build-up of cells disturbs the function of these glands and leads to reduced production of tears and saliva. This condition also interferes with the protective mechanisms of the eye and mouth. Eye inflammation and ulcers of the cornea, as well as fungal infections of the mouth (thrush), occur with increased frequency in those with Sjogren’s. Rarely, a person with this disorder develops a malignancy (cancer) affecting the lymphocytes (lymphoma). Today, Sjogren’s syndrome is itself accorded the status of a distinct connective tissue disorder.

Sjogren’s Syndrome also occurs in some people with lupus. They have an increased frequency of sun-sensitive rashes and Sjogren’s-related blood antibodies (anti-SSA and anti-SSB antibodies). Women with anti-SSA antibodies are at increased risk of having babies with “neonatal lupus.” Symptoms in the infant can be as minor as a temporary lupus-like skin rash, or as serious as permanent damage to the electrical system of the heart which results in a very slow heart rate (complete heart block).

The best treatments for Sjogren’s Syndrome include: artificial tears (usually satisfactory) and either artificial saliva (most often unsatisfactory) or a saliva stimulant such as pilocarpine, and hydroxychloroquine (Plaquenil). Eye drops containing cyclosporin have also just been introduced and have significant benefit for dry eyes in some cases. Arthritis, fatigue and skin rash in people with Sjogren’s is often treated with Plaquenil.

Frequency Of Overlap Syndromes In People With Lupus

The majority of people with lupus have lupus alone. Between 5 and 30 percent of people with lupus report having overlap symptoms. The likelihood of a person with lupus also having an overlap disease is 15 percent, distributed as follows:

 

Overlap Disease Approximate Rate
of Occurrence
Rheumatoid Arthritis
1%
Polymyositis-Dermatomyositis
2%
Mixed Connective Tissue Disease
3%
Scleroderma
4%
Sjogren’s syndrome
5%

 

 

Heredity And Overlap

It is unusual (less than 10 percent of the time) for a person with lupus to have a close family member (parent, child, brother, or sister) who also suffers from lupus. However, it is common for persons with lupus to have relatives (including grandparents, aunts/uncles, cousins) with other connective tissue diseases such as rheumatoid arthritis, Sjogren’s Syndrome, scleroderma, etc. These co-occurrences raise the possibility that heredity may be a factor in all of the connective tissue diseases. Most scientists agree that important hereditary associations with these diseases are present in some families. Additional research is needed to shed light on this important question.

Prognosis For People With Lupus And Overlap Syndromes

It is important for those with lupus to be aware of the symptoms that might indicate the development of “overlap” features, since these symptoms and abnormalities may be best managed with treatments not typically used for lupus. Fortunately, when an overlap syndrome is present, the symptoms characteristic of the other connective tissue diseases involved are usually mild and not life-threatening. 

Treatments for Lupus

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This information is from the Lupus Cleveland Website. It shows the types of things used to treat Lupus and all the different manifestations of the disease. It is well written and easy to read. If you would like to understand Lupus better, this is a good article to read. Enjoy!

TREATMENT

Currently, there is no cure for lupus; however, early diagnosis and proper medical treatment can significantly help to control the disease. Symptoms often vary from one individual to another and treatment is based on specific indications in each person. Still, a few general guidelines can be listed:

  1. Regular rest is important when the disease is active. When the disease is in remission, increased physical activity is encouraged to increase joint flexibility and muscle strength.
  2. For the individual who is photosensitive, the regular use of sunscreens will help prevent rashes and irritations. For those who develop rashes, treatment with cortisone creams is very helpful.
  3. Achy joints (arthralgia) and arthritis generally respond to aspirin or aspirin-like drugs (non-steroidal anti-inflammatory drugs).
  4. The anti-malarial drug hydroxcholorquin (Plaquenil) is often prescribed for more severe joint or skin involvement.
  5. Cortisone drugs (the most commonly prescribed is Prednisone) are often used for more severe organ involvement. Not everyone with SLE needs cortisone. Cortisone, particularly in higher doses, has possible hazardous side effects.
  6. If you have a fever (over 100 degrees F), call your doctor.
  7. Go to your doctor for regular checkups. Regular checkups usually include blood and urine tests.
  8. When in doubt, ask. Call a doctor.

Treatment plans should meet the individual patient’s needs and may change over time. To develop a treatment plan, the doctor tries to:

  • Prevent flares
  • Treat flares when they do occur
  • Minimize complications

The doctor and patient should reevaluate the plan regularly to ensure that it is as effective as possible.

Several types of drugs are used to treat lupus. For people with joint pain, fever, and swelling, drugs that decrease inflammation, referred to as nonsteroidal anti-inflammatory drugs, or NSAIDs, are often used.

While some NSAIDs are available over the counter, a doctor’s prescription is necessary for others.

Common side effects of NSAIDs include stomach upset, heartburn, diarrhea, and fluid retention.

Some lupus patients also develop liver and kidney inflammation while taking NSAIDs. It is especially important to stay in close contact with the doctor while taking NSAIDs.
Antimalarials are another type of drug commonly used to treat lupus. These drugs were originally used to treat malaria, but they are also useful in treating lupus.
Antimalarials may be used alone or in combination with other drugs to treat fatigue, joint pain, skin rashes, and inflammation of the lungs. Continuous treatment with anti-malarials may prevent flares from recurring.

Side effects of antimalarials may include stomach upset and, very rarely, damage to the retina of the eye.

The most common treatment for lupus is corticoid steroid hormones. Corticoid steroids are related to cortisol, a natural anti-inflammatory hormone. They hold back inflammation very quickly.

Corticoid steroids can be given orally, in creams applied to the skin, or by injection. Since they are potent drugs, the doctor will use the lowest dose with the greatest benefit.

Short-term side effects of corticoid steroids include swelling, increased appetite, weight gain, and emotional ups and downs. These side effects usually stop when the drug is stopped.

It can be dangerous to stop taking corticoid steroids suddenly, so it is very important that a doctor recommend changes for the corticoid steroid dose.
Sometimes doctors give very large amounts of corticoid steroid for a short time by vein. With this treatment, typical side effects are less likely and slow withdrawal is not necessary.

Long-term side effects of corticoid steroids can include stretch marks, excessive hair growth, weakened or damaged bones, high blood pressure, damage to the arteries, high blood sugar, infections, and cataracts.

Typically, the higher the dose of corticoid steroids, the more severe the side effects are. The longer corticoid steroids are taken, the greater the risk of side effects becomes.
People with lupus who use corticoid steroids should talk to their doctors about taking supplemental calcium and Vitamin D. These supplements reduce the risk of fragile bones called osteoporosis.
For patients whose kidneys or central nervous systems are affected by lupus, a type of drug called an immunosuppressive may be used. Immunosuppressive hold the immune system back by blocking the production of some immune cells.

Immunosuppressive may be given orally or by IV.

Side effects of immunosuppressive may include nausea, vomiting, hair loss, bladder problems, decreased fertility, and increased risk of cancer and infection. The longer the treatment with immunosuppressive, the higher the risk of side effects becomes.

Since some treatments may cause harmful side effects, it is important to tell the doctor about any side effects right away. It is also important NOT to stop or change treatment without asking the doctor first.

Common medications for lupus

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These medications will vary from person to person because lupus is different in each individual and only your doctor can decide what is the best line of treatment for your symptoms. This is just an overall guide. Some people will never have to take most of these drugs while others may have to take most of them at some point in their disease. This information is from the Lupus Foundation of America’s web page. Please refer to their page for more information.

Medications to Treat Lupus Symptoms

Anti-Inflammatories

Anti-inflammatory medications help to relieve many of the symptoms of lupus by reducing inflammation and pain. Anti-inflammatories are the most common drugs used to treat lupus, particularly symptoms such as fever, arthritis or pleurisy, which generally improve within several days of beginning treatment. For many people with lupus, an anti-inflammatory drug may be the only medication they need to control their lupus.

  • Aspirin is inexpensive and available over the counter. It has pain-reducing, anti-inflammatory, and anticoagulant (blood-thinning) properties that can control some of the symptoms of lupus. However, aspirin can cause stomach irritation.
  • Acetaminophen, known to most people as Tylenol®, is also used to reduce pain. Although it causes less stomach irritation than aspirin, acetaminophen does not help with inflammation and cannot control any of the disease activity of lupus. Most people have no side effects when taking Tylenol, but in rare cases acute liver failure has occurred.
  • Non-Steroidal Anti-Inflammatory Drugs (NSAIDs) suppress inflammation and are especially useful for joint pain and stiffness. Examples of NSAIDs are ibuprofen (Motrin®), naproxen (Naprosyn®), indomethacin (Indocin®), nabumetone (Relafen®), and celecoxib (Celebrex®). People often respond better to one particular NSAID than another, so you may need to try several different products to determine the most effective one for you.

Like aspirin, NSAIDs can cause stomach irritation. NSAIDs may also cause serious gastrointestinal (GI) complications, such as a bleeding ulcer. To reduce the chance of these problems, NSAIDs are usually taken with food, milk or antacids, or may be accompanied by other medications such as misoprostol (Cytotec®), omeprazole (Prilosec®), lanzoprazole (Prevacid®), and others.

Side effects of NSAIDS, such as abnormal urine test results, occasionally may be mistaken for signs of active lupus. Recognizing this possible complication of NSAID use is important, because the symptoms will go away when the drug is stopped. In general, you should always be cautious about taking too much of any NSAID, as excessive amounts can reduce the blood flow to your kidneys and may interfere with their ability to remove waste from your body.

Corticosteroids

Corticosteroids (also known as glucocorticoids, cortisone or steroids) are synthetic (man-made) drugs designed to work like the body’s naturally occurring hormones produced by the adrenal glands, in particular cortisol. Hormones are the body’s chemical messengers that regulate most of the body’s functions. Cortisol helps regulate blood pressure and the immune system, and it is the body’s most potent anti-inflammatory hormone. Corticosteroids prescribed for autoimmune diseases are different from the anabolic steroids that weightlifters and other athletes sometimes take to increase strength.

Steroid medications work quickly to decrease the swelling, warmth, tenderness, and pain that are associated with inflammation. They do this by lessening the immune system’s response. Prednisone is the most commonly prescribed steroid for lupus. Prednisolone and methyl-prednisolone (Medrol®) are similar to prednisone, and some physicians prefer to prescribe these if you have liver problems.

Most people take steroids in pill form, but topical creams or gels are often used for cutaneous (skin) lupus. Steroids in liquid form are sometimes injected into muscles or directly into joints, and in some cases into skin lesions. Pulse steroids are large liquid doses given intravenously (injected into a vein) over several hours; the beneficial effects can last for weeks so pulse steroids are sometimes prescribed to control a lupus flare, or for people who cannot tolerate steroids in pill form.

Your doctor will try to keep your steroid dosage at the lowest effective level. Once the symptoms of lupus have responded to treatment, the steroid dose is gradually reduced (tapered). As an alternative to tapering, or stepping down the steroid dose, your doctor may choose to have you take steroids on an every-other day basis — one day on, one day off.

Steroids can produce a variety of side effects. The most common are changes in appearance (acne, a round or moon-shaped face, weight gain due to increased appetite, and hair growth). Steroids can cause fluid retention and a redistribution of fat, leading to a swollen face and abdomen, but thin arms and legs. Also, the skin becomes more fragile and bruises easily. Steroids can suppress growth in children. Steroids can also cause irritability, agitation, excitability, insomnia, or depression. These changes in appearance and mood are more apparent with high doses of steroids.

Side Effects of Long Term Steroid Use

  • Increased risk of infections poses the most danger. If you are taking steroids you must take extra care to clean and protect any open wounds. Infections are one of the leading causes of death in people with lupus.
  • Avascular necrosis of bone, which occurs most often in the hip, is the destruction of the bone itself and is quite painful. Relief from pain often requires total surgical joint replacement.
  • Osteoporosis (bones become fragile and more likely to break) leads to bone fractures, especially compression fractures of the vertebrae with severe back pain.
  • Muscle weakness
  • Cataracts
  • Suppression of growth in children

Antimalarials

Antimalarials are used in combination with steroids and other medications, in part to reduce the dose required of the other drugs. Antimalarials are most often prescribed for skin rashes, mouth ulcers, and joint pain, but also can be effective in mild forms of lupus where inflammation and blood clotting are a concern. Antimalarials improve lupus by decreasing autoantibody production, protecting against the damaging effects of ultraviolet light from the sun and other sources, and improving skin lesions.

The two types of antimalarials most often prescribed today for lupus are hydroxychloroquine (Plaquenil®) and chloroquine (Aralen®). Unlike the rapid response seen with steroids, it may take months before antimalarial drugs improve your lupus symptoms.

Side effects from antimalarials are rare and usually mild; they include upset stomach and changes in skin color. These side effects usually go away after the body adjusts to the medication. In high doses certain antimalarial drugs may damage the retina of the eye, causing vision problems. With the low doses of antimalarials used in the treatment of lupus, the risk of this complication is extremely low. However, as a precaution, people treated with antimalarials should see an eye doctor (ophthalmologist) regularly.

Women who are pregnant should continue to take their antimalarial medication as prescribed, in order to avoid a lupus flare. Although this medication can cross the placenta, the possibility of eye and ear toxicity in the infant is very low. In fact, recent studies suggest that the risk of flare for the mother is greater than the risk of fetal toxicity.

Immunosuppressives (Immune Modulators)

Immunosuppressive medications are used to control inflammation and the overactive immune system, especially when steroids have been unable to bring lupus symptoms under control, or when a person cannot tolerate high doses of steroids. However, there can be serious side effects from these drugs, so if you are being treated with immunosuppressives you should be carefully monitored by your physician. Immunosuppressive drugs reduce your body’s ability to fight off infections, and increase the chances that you could develop viral infections such as shingles (chicken pox, or herpes zoster). It is extremely important that you pay attention to even the smallest cut or wound, and let your doctor know if any sign of infection begins, such as redness, swelling, tenderness, or pain. These drugs may also increase your risk for developing cancer.

Each immunosuppressive drug has unique side effects. Therefore it is important that immunosuppressive drugs be given only by physicians who are experienced with the use of these medications.

Cyclophosphamide (Cytoxan®) was developed to fight cancer. Although in its early years of use it was taken in pill form, today Cytoxan is taken through the vein (intravenously, or IV). It has been shown to improve kidney and lung disease, but can affect a woman’s menstrual cycle and can cause bladder problems, hair loss, and sterility.

Methotrexate (Rheumatrex™), also developed to fight cancer, is known as the “gold standard” — the best drug — for the treatment of rheumatoid arthritis. It has also been shown to be very effective in treating skin lesions, arthritis, and pleuritis in people with lupus. However, the drug can cause sun-sensitivity, liver damage, including cirrhosis, and lung infections. If you are taking this drug you should not drink alcohol, especially if you have a history of kidney disease. If you are taking high-dose methotrexate you should not use NSAIDs; caution is also advised when taking aspirin. Nausea, mouth sores, and headaches are the most common side effects of methotrexate.

Azathioprine (Imuran®) was developed to prevent rejection of kidney transplants. It blocks inflammation pathways in lupus and helps to lower the steroid dosage and improve liver and kidney disease. However, it may cause pancreatitis and an allergic form of hepatitis, so liver function tests and blood counts should be done regularly.

Anticoagulant

Because blood clots can be a life-threatening symptom of lupus, these drugs are used to thin your blood to prevent it from clotting too easily. Anticoagulant medications include low-dose aspirin, heparin (Calciparine®, Liquaemin®) and warfarin (Coumadin®). In particular, if you are being treated with warfarin you must be monitored by your doctor to be sure your blood does not become too thin. Anticoagulant therapy may be lifelong in some people with lupus. Very recent research has shown that people’s genetic makeup may influence how they respond to warfarin; specifically, that people with variations in two genes may need lower warfarin doses due to differences in how the body breaks down (metabolizes) warfarin and regulates the ability of warfarin to prevent blood from clotting. Therefore the dosage and administration of warfarin must be individualized for each person.

Frequently Asked Questions

 

I don’t want to go on prednisone. Are there any other treatments available?
In addition to corticosteroids, lupus can be treated with non-steroidal anti-inflammatory drugs, anti-malarial medications, and chemotherapy drugs. There can be situations where steroids are the best choice of therapy and the other medications are not indicated or are ineffective.

What side effects can I expect from taking steroids?
Prednisone is a double-edged sword. It is a very effective anti-inflammatory agent in lupus, and it works fast. But over time, the side effects of higher doses of the medication can be significant. People taking steroids may have side effects that include weight gain (especially in the cheeks and over the back of the neck), acne, hair thinning on the scalp, new facial hair (on the chin or above the lips), mood swings and difficulty concentrating. Your doctor may also discover that your prednisone has caused higher blood pressure, higher glucose levels and higher cholesterol. Prednisone can also weaken bones and damage the blood supply to joints, which usually occurs first in the hips.

Does long-term prednisone use cause diabetes?
Cortisone and its analogues are “stress hormones” that prime the body for times of challenge. Thus, the rise in sugar in the body is a natural byproduct of a preparation for stress in tissues of the muscles, brain, and heart for example. This is why an increase in the stress hormone results in an increase of the body’s stores of glucose. Long-term prednisone use can cause diabetes in someone who has a tendency to be diabetic. Moreover, the higher the dose of prednisone, the greater the likelihood that the blood glucose (sugar) level will rise. Obesity and a genetic background that includes diabetes also gives a person a greater chance of developing diabetes.