Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Welcome Carol, I don’t remember seeing your note yet. Don’t be afraid. Education dispels fear. I have been on Placquinil for almost 10 years. My eye Dr. said that in almost 20 years he has never seen eye damage from that drug. I get my eyes checked twice a yr. I have never heard of Choline. I take Celebrex. Many of us have multiple illnesses. I got cancer 7 years ago and the treatments hurt me permanently . I have interstitial cystitis as a result. I had a small stroke. I now have osteoporosis, arthritis, TMJ dysfunction, IBS, Fibromyalgia, degenerative disk disease, and cognitive dysfunction (lupus fog). I probably forgot something. I am on permanent disability. I have had lupus as a teen but didn’t get a dx until I was in my 40’s. I am 57, married and we have a 22lb Manchester terrier. My two kids are grown and live out of state. Here is some information for you: GENERAL ASPECTS OF LUPUS Q How can I explain lupus to my friends? A Lupus is a disease in which the immune system of the body becomes too active. This over-activity affects the blood, and in turn, almost any organ in the body. The commonest clinical problems are tiredness, skin rashes, allergies, joint and muscle pains, and, if the disease spreads, of kidney, lung and other organ disease. Q Is lupus still considered a rare disease in the UK? As none of my friends have heard of it I suppose it must be? A At long last, lupus is being recognized as the important disease it is in this country. Figures for its prevalence vary between 1 in 800 and 1 in 1000 women. It is commoner than many well-known diseases, such as multiple sclerosis. In the 30 years in which I have been running a lupus clinic in this country, the picture has changed out of all recognition. When I first started, lupus was considered to be extremely rare and there was very little research undertaken - happily this has changed and many physicians now have experience in lupus. Q Are there different types of lupus? A There are two main forms of lupus. Discoid lupus is a milder form of the disease, which involves only the skin, usually the face, neck and sometimes the upper chest. It may cause raised scaly skin areas and/or irregular bald spots on the scalp. The second type, which is usually more severe, is called Systemic Lupus. It involves the internal organs and systems of the body. Although systemic lupus may be mild, if it is not controlled it can result in damage to vital organs such as the kidneys, brain, heart and lungs, and therefore may be life-threatening. Q Are there more cases of lupus now than say 10 years ago, or is it just better known? A There are certainly many more cases of lupus throughout the world. It is conventional for we doctors to say that the reason for this is “better recognition” of mild cases, but in my heart of hearts, I think the disease is genuinely on the increase. 1 Q At what age does lupus usually occur? A Lupus occurs at any age. It occurs in the newborn, in rare instances. Some cases appear in childhood . The main age groups are the 15-45 year olds and there is a huge female predominance - women outnumbering men by 9 to 1. Q When telling somebody I have lupus, they said that’s just like ME isn’t it? Is there any relationship as I was lost for words? A Many of our lupus patients are first diagnosed with having ME. It must be remembered that “ME” is a rather diffuse syndrome with widespread aches and pains and stiffness, and in fact is a mimic for many diseases. Lupus is NOT related to ME in any direct sense. Q Is lupus contagious or infectious? A There is no evidence that it is either contagious or infectious. Q What “triggers” lupus? A During its course, there may be “flare-ups” when the disease is active and remissions when the disease is controlled. Perhaps the best-known triggering factor is sunlight. Infections, injury, surgery, overexertion and exhaustion, nervous tension and emotional upsets have all been identified as possible precipitating factors. Certain drugs, such as sulfa compounds, may produce lupus symptoms and cause flare-ups. Q Why are lupus patients not being asked to partake in trials for medication etc. as they are in many other prevalent diseases? A Lupus patients are taking part in trials throughout the world - certainly our research work at St ’ is totally dependent on the help of our patients. I agree that drug trials may be less frequent in lupus than say in osteoarthritis, rheumatoid arthritis and osteoporosis, where big drug companies are competing with each other for new therapies in these huge markets. Lupus, in this respect, has always been a “poor relation”. However, in terms of scientific and clinical research, collaboration between doctors and lupus patients is producing results. Take a look at any issue of the international research journal “LUPUS” for example. 2 Q I have read of a connection between glandular fever and lupus. Is there any truth in this? A The virus that causes glandular fever has not been shown to cause lupus. Having said this there are many patients with lupus who, especially in their teens and twenties, are given the label of “recurrent glandular fever”. This is probably because they have had swollen glands and general malaise and aches and pains - features common to both diseases. Q I am a male sufferer, will lupus affect my ability to father a child? A No, there is no specific hormone or reproductive problems in the majority of males with lupus. Q Why is there a 9 to 1 female to male ratio in lupus? A We still do not know why there is such a strong female preponderance, though a lot of research work is focusing on the effect of various sex hormones on the immune responses. It is also a mystery because men who develop lupus do not have any particular hormone abnormalities. Q My lupus seems to get worse before my periods. Is this unusual? A This is very common and a very prominent feature of lupus. In some patients the joint pains and general tiredness are far worse in the days before the menstrual period. Perhaps this is another example of the importance of hormones in the clinical pattern of lupus. Q Everyone tells me how great I look, but I feel rotten. How do I tell them about myself? A You are absolutely right. One of the biggest problems in lupus is that most patients LOOK completely well. There is no easy answer to this question. I find that my patients each handle this problem differently. The help of close friends or family is often vital here, being better able to explain this disease to the unsympathetic neighbor or colleague. Q Has anything been found to link lupus with areas of the country? A There is no good evidence for this at the present time. In general local “epidemics” have been associated more with the training of the doctor and his or her ability to diagnose lupus cases at an early stage. 3 Q If you have lupus, can you not get AIDS? A One does not protect from the other. There have been a few reports from America of both AIDS and lupus in the one patient. Q How often should my consultant see me for a check-up if my lupus is still active, or even when it’s calm? A In our unit we see patients frequently when the disease is active, or when changes are being made in treatment, but for those with quiet disease or disease in remission we tend to see every 6 months. This is not ideal as 3 monthly appointment would be the norm in many countries, but sadly, our waiting list dictates our position. Q What are your views on breast silicone implants? I was considering this step when my lupus is calm. A Although the “official” line is that these do not cause autoimmune diseases, I think there is still a suspicion hanging over them, especially in people with an autoimmune disease background such as lupus. Unfortunately the whole issue has been muddied by the legal side and good research is now hard to come by. My own advice on this, for what it is worth, is to avoid silicone implants if at all possible. Q When applying for a job, I have to fill in a medical form. As soon as this is seen I magically don’t get the job. Do you feel a lupus sufferer should be discriminated in this way if their lupus is calm and they are able to do the job that is required? A Unfortunately the situation you describe is all too common and in my clinic I spend a lot of time writing letters in support of my patients who have been discriminated against by the label “lupus”. I suppose in one way it is understandable if an administrator or clerk looks up lupus in one of the older books and reads a saga of doom and gloom; the odds are “stacked against you”. I think that with general education of the public this is changing for the better but certainly if your disease itself is not severe you should try to get your doctor to write a strongly supportive letter. You may know that some of the members of my extremely busy team at St ’ themselves have lupus. 4 Q What does ‘being in remission’ really mean for the lupus patient? A ‘Being in remission’ means being well as far as clinical symptoms are concerned. We find many patients who are clinically very well but in whom the blood tests are still not back to normal. Definitions vary but, as far as I’m concerned, the clinical features are far more important than any immunological test results. Although most of us practicing in the world of lupus feel that the chances of prolonged and life-long remission are good - certainly after the age of 40 - only time will tell, and complacency is wrong as far as doctors are concerned. Q Is it common to progress from mild lupus to Sjogren’s Syndrome after the menopause, and would this mean that the debilitating fatigue, myalgia and arthritis of mild lupus, instead of hopefully disappearing with the menopause, might continue for the rest of my life? A Yes it is. Many of our lupus patients around the time of the menopause suffer less “serious” disease but are left with Sjogren’s Syndrome (dry eyes, dry mouth and aches and pains). Even these do not necessarily continue for more than a few years. Q Is rheumatoid arthritis the same as the arthritis my lupus gives me? A No. Rheumatoid arthritis can and does damage joints. In lupus the joints are not primarily damaged (prolonged high-dose steroids can in fact, cause joint damage, but this is a separate issue). Some lupus patients get deformities from tightening of their tendons, but this is rather different from the erosive or “corrosive” disease caused by rheumatoid. 5 THE GENETICS OF LUPUS Q I have read about a lupus chromosome/genetic link - is this true? A Yes, almost every department in the world studying lupus is looking at genetic aspects of the disease. All of us, both patients and doctors, know that there are families with lupus and genetic aspects are clearly involved - these are weak but definite. Those who study genetics (map readers of the gene) are finding clues in lupus, not yet as strong as in other diseases - but major advances are being made. Q I am a father with lupus whose son has just been diagnosed with lupus as well. Is this extremely rare? A Yes, it is. I have, in fact, one other family with a father and son involved, but this is within the context of a clinic seeing 2,500 patients! There are certainly genetic factors in lupus, although these are not as strong as in many other diseases. Despite the fact that this association is rare, I still think it underlines the need for lupus patients who are worried about their offspring having symptoms to have them tested for lupus. Q Do men have worse lupus than women? A No, there have been many studies of this question and the answer has always been that, in general, there are no major differences. Q My daughter of 10 has been diagnosed as having lupus, is the prognosis any different for a child compared to an adult? Will she always be chronically ill? A The prognosis for children has been shown to be the same as for adults, and NO she will not always be chronically ill. Many of my young patients are now leading normal lives and are off all treatment. Q Is lupus exactly the same in white and black sufferers? A In general, yes. There aren’t major differences. Older studies in America have suggested in particular that black patients had worse disease than white, but these studies were flawed in that they did not take into account treatment regimes, socio-economic status and so on. More modern studies show that although there are some differences (possibly more kidney disease in black patients), these differences are not as exaggerated as had been previously thought. 6 CLINICAL FEATURES OF LUPUS THE SKIN Q Do lupus patients have fluorescent tube lighting or VDU allergy? A In general no. Although ultra-violet wavelength light can make lupus worse, it is only the very, very exceptional patient who is exquisitely sensitive to UV light and develops rashes in intense fluorescent lighting. Normal office, shop and home fluorescent lighting is not a threat to the vast majority of lupus patients. Q I lost my hair, will it come back? A Yes. Hair loss is very common during active lupus and it almost invariably comes back, though there are some patients, with very severe discoid lupus, in whom patches of hair loss persist. Q My finger nails are always blue, should I worry about this? A There are a number of causes of nail discoloration and it is difficult to give an easy answer to this question. Certainly lupus (especially discoid lupus) can cause nail changes. So, too, can drugs - occasionally antimalarials cause a darkening of the nails, but there are many other conditions and it is worth seeing a doctor, perhaps a dermatologist. Q Lupus panniculitis or profundus - what is it? What triggers it? I have been on plaquenil, steroid creams and injections. A Lupus panniculitis is a rare inflammation of the fat beneath the skin, leading to a lumpy, sometimes painful dimpling of the skin and the tissue beneath it. It is an extension of skin lupus. It is rare and sometimes slow to respond to treatment (normally treatment is with plaquenil and occasionally with steroids). The cause is not known. It is usually not associated with more severe internal lupus. Q I have a severe reaction to insect bites. How do I deal with this? Is it common to lupus sufferers? A Yes, it is very common for lupus patients to suffer severe adverse reactions to insect bites. My experience has been that this does, in fact, fluctuate and sometimes, as the lupus becomes more quiet, the problems are less severe. 7 THE ORGANS Q I suffered liver damage due to a severe lupus flare, will it clear up or will I feel tired and unwell always? A Surprising though it may seem, the liver is rarely seriously involved in lupus - one of the organs which seems curiously to escape. When we see a lupus patient with liver abnormalities we always consider all other options, such as virus infection etc. I’m afraid in this case it would need your own doctor to answer this specific question. Q Does lupus lead to abnormal cervical smears? A Yes. Abnormal cervical smears are very common in lupus - though it is very rare that these abnormalities are serious or pre-malignant. The reasons for these abnormal smears are unknown, and certainly my own team at St ’ are studying this observation further. Q What are the dangers of protein in my urine? A Protein in the urine is the first sign, in many cases, of inflammation in the kidney. It is very important and may or may not require an increase in treatment. It is our practice here in the Lupus Unit at St ’ to teach patients to test their own urine for protein. A negative test at least provides a lot of reassurance. A positive test may require further investigation, especially if the protein in the urine persists. Q I suffer from lupus and in particular trigeminal neuralgia. Is this common? I am on carbamazepine - is this appropriate? A Trigeminal neuralgia - pain and pins and needles along one side of the face, often across the cheekbone, is a common medical condition. Normally, the cause is unknown. Yes, it is seen in lupus and perhaps even more frequently in patients who have Sjogren’s Syndrome (dry eyes and dry mouth). You say that you are on carbamazepine, which is the most widely used medicine for this troublesome complaint. It has no adverse effects in lupus patients. 8 Q What is the link between inflammatory bowel disease and lupus? I have ulcerative colitis and lupus. Are there many suffering like me? A There are a small number of lupus patients who do suffer from inflammatory bowel disease. There is a far greater number who have “irritable bowel”. The distinction is often very difficult to make and requires expert gastro-intestinal consultant opinion. Q How can the hips be affected in lupus arthritis and what is the treatment? A The hips can be affected in lupus - usually mildly. A potentially more serious problem is in patients who have been on steroids for a long time, where softening of the hips occurs (so-called avascular necrosis). Sometimes this is sufficiently severe to warrant hip replacement. Q I am so moody and depressed, is it the lupus or the drugs? Is there anything I can do? A Both the disease and the drugs (especially steroids) can cause these symptoms. Lupus in particular can cause lethargy, moodiness and depression. In some patients the depression can become severe. It is important to recognize this, as medical treatment of the lupus can help this problem. Q Do many lupus sufferers have to undergo spleen removal or are there any other satisfactory means of platelet control? What are the benefits of spleen removal? A A small number of lupus patients undergo spleen removal. In some patients the first manifestation of lupus has been bruising and a low platelet count, and the original diagnosis is “thrombocytopenia” (low platelets). In some, the disease does not respond to conventional medicines, including steroids, and ultimately spleen removal is required. The results of spleen removal are largely (though not always) successful and the results in lupus are as good as those in patients who do not have the disease. There is one negative as far as spleen removal is concerned and that is an increased risk of certain infections such as pneumococcal infection. Vaccination for this is vital. 9 Q I have a pleural effusion from lupus. Can it be reversed and what is the treatment now? A Pleurisy (inflammation of the lining of the lungs) and fluid in the pleura (so called pleural effusions) are a feature of lupus flares. Yes, they can be reversed, usually with steroid treatment, and the good news is that they rarely leave any permanent scarring or side-effects. Q I bruise easily, is this lupus or steroid medication? A Bruising is most commonly a feature of steroid medication. It is almost universal in people who have been on steroids for a long time. Lupus patients who are not on steroids, in fact, have no major problems with bruising, though there is a rare condition in lupus known as thrombocytopenia (low platelets), and, if bruising is a major feature and you are not on steroids, then the platelet count should be checked. 10 BLOOD TESTS IN LUPUS Q What tests can be done to find out if I have lupus? A The screening test for lupus is the anti-nuclear antibody (ANA) test. This is very helpful, some 90 to 95% of patients being positive. Obviously, from this figure, it is clear that a negative ANA does not EXCLUDE the diagnosis, but in any patient or family where lupus is suspected, this is the test the GP should be ordering. If this test is positive then more specific tests for lupus such as anti-DNA testing can be arranged. Q Is a positive ANA always serious? A No, many people have positive ANA’s without any symptoms whatsoever (interestingly we find an increased prevalence of positive ANA’s in relatives of lupus patients). Q Is it possible I have lupus or a connective tissue disorder with negative blood result tests? I have a multitude of medical problems and believe there is some systemic factor involved. A Yes, there are some lupus patients in whom the conventional antinuclear antibody tests are negative. In the main, these are patients with skin rashes and little in the way of generalized internal problems. The true number of such cases is obviously unknown. A lot depends on definition, but the agreed figure is probably quite small, 1% to 5% of lupus patients. Q Should my young son and daughter have blood tests to check that they don’t have lupus? A In general no. If, however, your teenage son or daughter develop symptoms which worry you, then I think a screening antinuclear antibody (ANA) test is worth while. The commonest teenage feature to look out for are joint pains (“growing pains”), recurrent “glandular fever” or recurrent migraine headaches. 11 Q Should I sit in the sun and find out if I’m sensitive or can a test be done? A I wish there were tests which could forecast who is sun sensitive and who is not. Matters are more difficult as the tendency to photosensitivity may fluctuate. Some patients whose disease has gone into remission appear to be no longer sun-sensitive. In general, the patient knows best and treats the sun with caution. Q Why is my ESR always important when blood tests are taken? A The ESR is a useful barometer of disease activity. It is not specific for lupus. For example, it can go up in anything from influenza to malaria, but it does provide a general idea of whether there is inflammation in the body or not. It is cheap and easy to measure and therefore one of the first tests which is carried out in someone who is unwell. Q My white count is decreasing slowly, now at 2000. All my other tests are normal and my kidney function is good. I have had lupus nephritis and was on cyclophosphamide and went into remission. I am on 10mg steroid, alternate days, Istin 5mgs and Innovace 5mgs at night. A It is common for lupus patients to run a low white cell count, often around 2,000, and many such patients manage very well with this surprisingly low blood count. Obviously it is the concern of both doctors and patients that cyclophosphamide may have been responsible (you do not say how long the cyclosphosphamide was given). From what you say, I would not worry unduly at this stage about the white cell count, unless it continues to fall. 12 THE TREATMENT OF LUPUS Q Do lupus consultants disagree about the treatment of lupus in specific cases or in general? I have often been given opposite treatment regimes when my particular consultant is away. A In general there is surprising unanimity amongst consultants dealing with lupus. The annual international conferences such as that of the American College of Rheumatology and the international lupus meeting generally show huge agreement concerning progress in management. Yes, there are differences, and it is very sad to hear that you have been given different opinions by different doctors. Are these all lupus experts? I must say, as a rheumatologist, I find that our work in lupus involves more agreement and co-operation between specialists and across nations than any other aspect of my job. Q I have been told that having lupus I should not take sulphonamides - what are they and are there any other drugs I should avoid? A It is certainly true that lupus patients have a very high percentage of adverse reactions to sulphonamides. Luckily these drugs are rarely given nowadays. A related drug, however - septrin - is still used for urinary infections and I advise my lupus (and Sjogren’s) patients to avoid this drug if possible. Adverse reactions to septrin, notably rashes, are almost universal in our lupus patients. Tattoo it on your forearm “Don’t give me septrin”. Q Can I have a flu jab? Should I anyway? A Patients with lupus do not appear to be at risk from flu, though it can be argued that sick patients are at extra risk for the more serious complications of flu and would therefore be wise to obtain a flu jab. Some lupus patients in my experience certainly do suffer uncomfortable reactions to flu jabs, though whether more frequently than non-lupus individuals is uncertain. Q I am now 70 years of age and have had active lupus for 20 years. My doctors had told me after diagnosis that 5 years was my limit. Am I unusual or just very lucky? A No, you are not unusual. In the old days doctors used to think that lupus invariably had a poor prognosis, numbered in months or a few years at most. There are many like you and it is a reflection of how tremendously improved the prognosis is now recognized to be. 13 Q What do you think of new “wonder drugs” to treat osteoporosis? Will it help my steroid-induced osteoporosis? A Yes, there are major advances in the management of osteoporosis. Many patients with lupus have been on long-term steroids and osteoporosis is a real problem here. The careful use of hormone replacement treatment and the new vitamin D-like agents have been very useful and definitely advantageous in the management of these problems. Q Do you believe diet plays a part in lupus control? A Yes I do. A number of patients have allergies to certain foods, usually shown by an increase in joint pains. There is no rule about this and I always advise patients to keep a mental diary of days on which their joints and other symptoms seem to be worse in order to try and pin-point a pattern. Q What is Raynauds disease and how can I help myself in the winter? A This is a condition where the fingers become extremely cold and white. It is worse in cold weather and can be severely disabling. Great care is required in winter and many patients need to wear gloves at all times outdoors. Very occasionally some patients have required electrically-heated gloves. Q What should I do when I have active lupus and get a bad cold or flu? A There are no particular extra requirements in lupus as far as colds are concerned. Flu is a much more aggressive virus infection and patients on steroids may need a slight increase in steroid dosage under the guidance of their doctor. Q I would very much like to cheer myself up and go blond. Is it safe to have bleach put on my hair, could I also have a perm? A Yes, by all means do so. When lupus is moderately under control, then most patients get away with treating their hair in a variety of ways! When lupus is active and hair loss is a feature, the hair is much more delicate and at this stage it is certainly clinical experience that hair dyes, bleaches and so on, can be a problem. 14 Q Due to antibodies in my blood I cannot be found a donor to match me for a blood transfusion. Is this peculiar to me, or to other lupus sufferers as well? A This is unfortunately a problem sometimes seen in lupus patients. Lupus patients have a whole variety of antibodies and in some cases these do cause miss-matching problems in blood transfusions. It is not peculiar to you and needs very careful checking with blood transfusion experts. Q I have developed osteoarthritis in both knees and I have been told by my surgeon that replacement is necessary. He is reluctant because I have lupus. Is his concern justified or can I undertake it without a considerable risk of my lupus flaring up? I am 69, have had lupus for 50 years and am able to lead an acceptable existence. A There is certainly nothing against having surgery in systemic lupus, and many of our patients, for various reasons, undergo surgery. If the lupus itself is active, it is the normal practice for the anaesthetist to increase the steroid dose, but when the disease remains quiet there may be no need to take any special medical precautions. Q I have kidney-affected lupus, will I recover from this when my lupus is calm? A Yes. The kidney is an organ which scars and the aim of modern treatment is to try to catch inflammation in the kidney early on in order to “put out the fire” as quickly as possible and to avoid permanent scarring. Q Are kidney transplants required for those patients with lupus-induced kidney disease? A For those patients who have developed end-stage kidney failure, transplantation has been very effective indeed. It perhaps came as something of a surprise in the early days that the lupus didn’t recur and damage the kidney. Oddly enough, it is unusual following renal transplantation for the underlying lupus itself to remain active. Q Is plasma exchange still a good option? A In very occasional cases plasma exchange is helpful but it has not proved as universally effective as the early reports had hoped - the usual story! 15 Q I have started swimming regularly and am concerned that it will aggravate my joints. A Swimming is one of the best sports for people with lupus, especially those with joint problems. It often surprises both patients and doctors how much improving muscle tone helps the joints. Q What do you think about alternative therapies? A Perhaps it is not surprising that quite a number - perhaps the majority - of patients attending our Lupus clinic also undergo alternative therapy and I have nothing against it. My only caution here would be not to fall into the hands of people who are charging large sums of money for what is, after all, unproven therapy. DRUGS Q I sometimes think the side-effects of the drugs helping my lupus cause greater problems than the illness - am I right? A Many of the treatments used in lupus have side-effects. Some of the problems of lupus, such as kidney disease, may not be painful and may go unnoticed and it is not uncommon for a patient when first started on treatment to feel that they are going backwards rather than forwards. On the positive side, during the past 20 to 30 years the management of lupus has become much more precise, and “fine-tuning” has helped make the old vision of patients on long-term high-dose steroids less common. Q What are the dangers of stopping one’s dosage of prednisone? A Stopping steroids suddenly can be dangerous. The adrenal glands may be suppressed and fail to work properly and the patient may end up in the hospital in a matter of days. So, it isn’t a good idea to stop prednisone without being under a doctor’s supervision. Generally, it is best to taper the dose slowly over a period of months. Q Is pulse therapy preferable to taking steroids orally? A Most physicians use injections (a drip) of steroids in the early stages of management, especially when it is urgent to get things under control. Repeated pulses are rarely given, and once the patient’s disease is brought under control by the initial treatment, most physicians use steroid tablets. 16 Q How does a consultant know which antimalarial drug to prescribe when there are so many? A Different antimalarials have different effects and different side-effects. Hydroxychloroquine (plaquenil) is by far the safest and most widely used. It is not as strong as mepacrine, but mepacrine is limited by the major side-effect of causing skin pigmentation (a yellowish color when used in higher does). Chloroquine (the older-used antimalarial) is probably more toxic and almost certainly is the drug which had the problem of eye toxicity. It is rarely used in this country. Plaquenil in very low dose (eg one 200mg tablet daily) is a very safe drug indeed Q Is it dangerous to take plaquenil long term? Can it damage my kidneys or liver? I take 200mg a day. Can your body become used to the drug so that it is no longer as effective? A Plaquenil is one of the safest medications that we know and many of our lupus patients around the world have been on this drug for years on end. It is very rare for it to cause internal organ problems such as damage to the kidneys or liver and blood tests are not required. The major limiting factor is eye testing but a small dose of one per day (200mg per day) is now believed to be very safe indeed. Q Can my sperm count be reduced by the drugs I take for lupus? A Certain drugs (particularly immunosuppressive drugs) do reduce sperm count. Fortunately the majority of drugs used in moderation in lupus (including steroids) do not have any adverse effect on the sperm count. Q Are there any new medications for lupus discovered during the last few years? A A number are being tried, but few can justifiably be said to be routine as yet. The major advances in the last 10 years or so have come from different ways of using old drugs, for instance more conservative steroid regimes, injections of stronger drugs such as cyclophosphamide rather than tablets, the more widespread use of antimalarials etc. 17 Q I have read recently in the newspaper about “stem cell transplant” and bone marrow transplant for lupus sufferers. Is this true? A Yes, over the years a number of patients with diseases such as lupus, scleroderma and rheumatoid arthritis have been seen to improve following marrow transplant (or stem cell transplant). This aggressive therapy has been used for certain malignancies such as leukemia and the improvement in the arthritis etc. has been coincidental. Now, however, with improvements in stem cell techniques, this treatment is being seriously considered for certain patients with severe connective tissue diseases such as lupus. The data is still very anecdotal at this stage. Q I read of a claim that the hormone DHEA has helped to diminish symptoms of lupus in a small group of women. Do you agree? A There are many people who have been advocates of the value of DHEA in lupus, but, until recently, there was little in the way of scientific trial. In the United States there is now an on-going scientific trial. Watch this space........ Q What are your views on methotrexate in lupus? My most common complaint is generalized joint pain which is unresponsive to non-steroidal anti-inflammatories. A Methotrexate is an extremely useful drug. It has revolutionized the rheumatology world and is perhaps the best-ever drug in the management of rheumatoid arthritis. Its use in lupus to date has been largely confined to those patients with moderate to severe joint problems, and it has not been as widely assessed in lupus as it has in rheumatoid. Anecdotally, a number of patients have done very well on methotrexate. Q Is it true that thalidomide is being used for lupus patients and why? A Yes, thalidomide is now being used in very severe cases of skin lupus, particularly some forms of discoid lupus. Obviously, in view of its toxicity, it can only be used in patients who will not become pregnant. It is being used under strict monitoring conditions at the present time, but it certainly does seem to have a place in the management of lupus in some patients. 18 Q I get recurrent infections from lupus, can I continually take a mild antibiotic to prevent this occurring? A In general doctors are against this. Long term antibiotics, except for specific reasons, bring about their own problems such as increased chance of fungus infections (thrush etc.) The major cause of infections in lupus is steroids and this more than anything else is the aspect which needs looking at in patients with lupus who have recurrent infections. Q I am so depressed, if it’s the steroids should I counteract them with anti-depressants? A Depression is a major feature in some lupus patients. Clearly, steroids themselves can contribute to depression but, more often than not, it is the disease which is associated. Certainly it is important, if depression does become severe, to obtain the correct treatment. For example, in our clinic we have a strong link with a neuro-psychiatrist who has a particular expertise in lupus and tells us whether or not medication is required. A number of our patients do benefit, not only by treatment of the lupus itself, but by direct treatment of the depression. Q Can my drugs given for lupus make me feel worse than the lupus itself? I am told they have worked in calming the lupus, but I feel awful. A Very definitely. High dose steroids over a long period have enormous side-effects and it is one of the major jobs of lupus doctors to try and taper down the treatment. I often tell patients that it is far harder to always strive to reduce the medication - it is very easy to prescribe a high dose of steroids knowing that this has a temporary benefit. Too much treatment means that the side-effects are sometimes worse than the disease itself. 19 PREGNANCY AND LUPUS Q Having suffered severe lupus, it is now calm and we are thinking of starting a family. Should I tell my GP? Will my lupus react to my pregnancy and should I increase my steroids? A From what you say, there seems every chance of a successful pregnancy. Clearly, it is important to know that the lupus is relatively calm, both from the clinical point of view and from the tests, that the blood pressure and kidney function are reasonable and that the anticardiolipin antibody levels are not high (patients with high anticardiolipin antibodies have a higher risk of miscarriage and this can now be largely prevented). There is no specific need to routinely increase the steroids just because of the pregnancy. Q I am scared of having a “flare-up” of lupus after a natural birth. What precautions can be taken? A Statistically, the chances of having a flare in lupus are higher after delivery. Having said this, the chances are still small - only a small minority of our lupus patients have flares in the few months after delivery of the baby. Nevertheless, we like to watch our patients more closely at this time and monitor the urine and blood tests more frequently. If the test results become more abnormal, then we can at least step in earlier with more active treatment. Q I have been found to have antibodies in my blood common to lupus. I am now pregnant, having suffered two miscarriages. Do I have lupus when pregnant but the disease is dormant when not? A This is a very important question and I will try to answer it clearly. If you have had two miscarriages and have antibodies in the blood it is quite possible that there is a connection. The most important antibodies are anticardiolipin antibodies which has been associated with a tendency to recurrent miscarriage. In answer to the second part of your question however, it does not mean that you have lupus when pregnant, the disease being dormant when not. If you do have anticardiolipin antibodies and are planning a further pregnancy you really should keep in close touch with your obstetrics doctor regarding the possibility of using low-dose aspirin as an anti-clotting agent. You may wish to find more about pregnancy and lupus from our two web sites listed on page 26. 20 Q My baby is to be delivered by caesarian section at 36 weeks to prevent my lupus flaring. Is this a good idea or not? I am worried about having a premature baby. A Obviously, there are many individual reasons for planning an early caesarian section, but do rest assured that this is common and generally beneficial for the baby. You really should not worry about having a premature baby at 36 weeks. Q Can azathioprine be used in pregnancy? A The answer, perhaps surprisingly, is yes, although obviously common sense and good practice dictates that the fewer drugs used in pregnancy the better. Q Should I not consider the pill as a contraceptive means? I have a problem in that other methods don’t suit me. A Many years ago (and more recently) we have looked at the pill in our lupus patients and have found that in general there are no major problems, especially with the mini pill. A small group of patients with antiphospholipid antibody (or anticardiolipin antibody) have more of a clotting tendency and obviously these patients present a totally different problem. Q Is HRT (hormone replacement therapy) advisable? A We have analyzed the effects of HRT in our lupus patients and it may come as something of a surprise that the majority of patients with lupus who go on HRT do not appear to flare in any way. In America HRT is known as estrogen replacement therapy - ERT. 21 ASSOCIATED CONDITIONS HUGHES SYNDROME Q I have been diagnosed as having “sticky blood” and receive treatment for it. I have so many problems with my health and have been prescribed everything possible to help, but to no avail. Everything I have read about lupus sounds “just like me”, but is it possible that I may have this condition and for it to have remained unaffected by all the various drugs I’ve tried? A The “sticky blood” syndrome is extremely important and is increasingly recognized as a major part of the symptoms in some lupus patients. Symptoms vary from headache, migraine, memory loss, fatigue, through to clots in the vein and more serious problems. It has become a major issue for doctors who now realize that not all lupus manifestations require steroids - some require measures such as aspirin to thin blood. For those who want to read about this syndrome (sometimes called the antiphospholipid or ’ Syndrome), there is a booklet from LUPUS UK. Also see our web sites on listed on page 26. Q Due to having Syndrome, I was prescribed warfarin. This has helped my lupus, is that possible? A Very definitely. One of the major advances in our understanding of this syndrome has been that not all patients require steroids. In those patients who have Syndrome (or, as the media call it, ‘sticky blood’), the treatment is not steroids but ways of thinning the blood (either aspirin in milder cases, or warfarin where the clotting has been a major problem). We have many, many patients in whom the whole illness has improved once they started warfarin. This is particularly true in patients who have had brain or other cerebral features. There is undoubted improvement in some of these patients in speed of thought process etc. when blood thinning treatment is started. Your observation is a very important one. 22 Q I have Syndrome, why do I have to be on warfarin for life? A As the syndrome has only been known for just over 15 years, it is still difficult to know what the true answer to this is. For those patients who have had serious clots or strokes, then it is our own policy to advise anticoagulation for life. For less life-threatening clots, then probably compromise is necessary. We are just about to embark on a major study of different anticoagulant regimes and I hope to keep you posted on the progress of this. Q Is it wise to have an angioplasty for cold toes if I have antiphospholipid antibodies? A Patients with antiphospholipid () syndrome have a tendency to clot. Therefore any procedure, including injections, angioplasties (procedures involving blood vessels) are at an increased risk from clotting. The physicians involved are normally well aware of this and watch the anticoagulant cover during such procedures very carefully indeed. Providing this is done, there is no reason against having this procedure performed. Q Are aspirins contra-indicated in lupus? If not, what is the correct dose, as my pharmacist and GP disagree on this matter? A Definitely not. In fact, with patients having the antiphospholipid () syndrome (sticky blood), aspirin is the first line of treatment. “Junior” aspirin 75mgs daily is very helpful in stopping the platelets of the blood sticking to each other and has helped many patients with this syndrome, particularly those who have had clotting of the placenta and recurrent miscarriages. Q Are there many people who have APS? A It has always been my belief that Antiphospholipid Syndrome (APS) will one day come be recognized as being more common than lupus. Different specialties recognize that their patients with migraine, with multiple sclerosis, with early strokes, with memory loss, with vein thrombosis, with recurrent miscarriage, could in fact be cases of APS and therefore potentially treatable. 23 Q Are lupus patients more susceptible to strokes and therefore should take aspirin daily? A The discovery of “sticky blood” - the antiphospholipid syndrome - in 1983 has been important in defining a sub-group of lupus patients who are more prone to clotting, including strokes. All lupus patients should be tested for anticardiolipin antibodies, an inexpensive and vital test, and if positive there is a strong argument for taking one junior aspirin every day as a preventative measure. Q Dr , now you have discovered and developed understanding of Syndrome, what is your next aim? A Our work concentrates on the mechanisms of why abnormal clotting occurs in some lupus patients ( Syndrome) and on the best means of stopping this. The implications of this syndrome are enormous. Patients who are attending neurology clinics for strokes, for example, vascular surgery clinics for DVT’s and a variety of other seemingly unrelated problems are coming to be recognized as having this syndrome. Most important of all is that between 5% and 25% of all women with recurrent miscarriages have this syndrome and it is an important and potentially very treatable cause of miscarriage. Even more exciting is the possibility that some patients wrongly diagnosed as “multiple sclerosis” or even Alzheimers, could in fact have Syndrome and be effectively treated. MIXED CONNECTIVE TISSUE DISEASE Q MCTD, how common is this and is it directly related to lupus? A Mixed connective tissue disease (MCTD), despite its rather cumbersome name, is an important condition closely related to lupus. The name “mixed” was given to it because it has features suggestive of more than one connective tissue disease, often with joint pains, muscle inflammation and especially with cold fingers (Raynaud’s). It differs from lupus in that kidney disease is distinctly rare. 24 Q Is auto-immune disturbance one disease with many and variable symptoms, or many diseases of symptoms clusters? I have been told over the years that I have lupus, scleroderma, Raynauds, MCTD, Sjogrens and am completely puzzled. A The symptoms and signs of lupus and related diseases are very varied, and you have obviously been through the mill as far as diagnostic labels are concerned. Mostly diseases do fit into one or other category, but there are some examples such as mixed connective tissue disease where the overlap is considerable, and obviously doctors as well as patients can get confused. Hopefully this is slowly improving as education in lupus and connective tissue diseases is more widespread. SJOGRENS SYNDROME Q Why do I have sore eyes? A A Swedish eye doctor named Hendrick Sjogren noticed that a number of his patients, in addition to having dry eyes and mouth, also had rheumatism. The term “Sjogren’s syndrome” has now been given to this condition - dry eyes, dry mouth, rheumatic disease. The rheumatic disease in question can be lupus, rheumatoid or a variety of other connective tissue diseases. The severity of the eye and mouth (and sometimes vaginal) dryness varies enormously. Many lupus patients in their 50s, when the more life-threatening aspects of the disease have abated, are left with the less serious but still troublesome features of the dryness. The eyes are treated with artificial tears (methyl-cellulose), but at present there aren’t any really satisfactory treatments for the mouth dryness. DISCOID LUPUS Q How serious is discoid lupus? A Generally, discoid lupus tends to remain confined to the skin. In those that have typical discoid lupus about five percent disseminate, but in the majority of cases it tends to remain localized. Despite its better prognosis, it nevertheless can cause widespread skin and scalp problems and required continuous and careful treatment. 25 OVERLAP SYMPTOMS Q I have lupus, Sjogrens Syndrome and Raynauds. I take Plaquenil. I am controlled, although I still have weight loss and most worryingly, memory lapses, learning difficulties and disturbing dreams. Should I accept this situation? Please enlighten me. A I though it appropriate to keep this question until last as it is so important. The fact is that in many patients the clinical picture does not seem to fit into one particular disease pattern. Although blood tests, especially sophisticated ANA testing, has helped to define different connective tissue diseases far more precisely, there are some patients where the unsatisfactory diagnosis “overlap syndrome” is made. In this situation, it is the clinical features more than the diagnosis which are important. In this question, for example, the memory and other problems may be due to medication. However, it may be due to “sticky blood”. Have you been tested for antiphospholipid antibodies? If not, why not? The antiphospholipid syndrome (“sticky blood”) is a feature of a number of patients with lupus and Sjogrens. One of its most frequent and prominent features is memory loss. And it is treatable - often by simply adding in junior aspirin, once daily. Back to your doctor! Straight away! ******************************************************************************************************************************************************************* COMMONLY ASKED QUESTIONS ABOUT LUPUS 1. What is lupus? Lupus is a chronic (long-lasting) autoimmune disease where the immune system, for unknown reasons, becomes hyperactive and attacks normal tissue. This attack results in inflammation and brings about symptoms. What does autoimmune mean? Literally it means immune activity directed against the self. The immune system fights the body itself (Auto=self). In autoimmune diseases, the immune system makes a mistake and reacts to the body's own tissues. What is inflammation? Literally it means setting on fire. It is a protective process our body uses when tissues are injured. Inflammation helps to eliminate a foreign body or organism (virus,bacteria) and prevent further injury. Signs of inflammation include; swelling, redness, pain and warmth. If the signs of inflammation are long- lasting, as they can be in lupus, then damage to the tissues can occur and normal function is impaired. This is why the treatment of lupus is aimed at reducing the inflammation. 2. Are there different kinds of lupus? There are three forms of lupus including: Cutaneous lupus (sometimes called Discoid) affects the skin. Systemic lupus attacks multiple systems in the body which may include: the skin, joints, lungs, blood, blood vessels, heart, kidneys, liver, brain and the nervous system. Drug-induced lupus may develop after taking certain prescription medications. Symptoms generally disappear, within weeks to months, after the drug is discontinued. Neonatal lupus, a fourth type, is a rare condition. It is not the same thing as SLE. 3. What are the symptoms of cutaneous lupus? The symptoms of cutaneous lupus may include a variety of different looking skin rashes, photosensitivity (where exposure to ultra-violet light triggers a rash), and sometimes ulcers on the inside of the nose or mouth. What do the rashes look like? There are a variety of ways that cutaneous lupus rashes can appear. The distinctive rash is called the " butterfly rash, " which is a rash that extends across the cheeks of the face and the bridge of the nose. It can be flat or raised; it can be bright red or it can be just a mild blushing, light pink coloration to the skin. It appears on the face in a pattern that looks like a butterfly; the wings are beneath both eyes and the body of the butterfly covers the bridge of the nose. Another classic rash found in cutaneous lupus is the discoid rash. This rash is coin-shaped or oval in shape, like a disk and it is seen on areas of the skin that are exposed to sunlight. Discoid lesions (sores) tend to be red and raised and become scaly. When they heal they can leave behind a scar. These rashes can also result in a change in coloring of the skin, making the area around the lesion either lighter or darker in color. These Discoid lesions may appear on the scalp; they may appear on the face in a butterfly distribution; they may also appear, as mentioned earlier, in areas where the skin receives sun exposure. Especially, for example, the V of the neck. Another type of lupus skin rash is classified as the subacute cutaneous lesions. These are lesions characterized by redness. They are also coin-shaped, very photosensitive and they get worse when exposed to ultra-violet light. These are lesions that do not leave behind scars, and can appear over large areas of the body. People who have subacute cutaneous lupus erythematosus (SCLE-a subset of cutaneous lupus) may experience systemic symptoms such as muscle and joint pain, fever and general discomfort. Serious kidney of nervous system problems are rare. These are just a few examples of what cutaneous lupus rashes may look like. Because the appearance of skin rashes in lupus can be quite variable, it can be difficult to diagnose just by looking at the lesion, and therefore other tests may be necessary. How is cutaneous lupus diagnosed? Cutaneous lupus, because of the great deal of variability in the way that the skin rashes may appear, can be quite difficult to diagnose. However, a skin biopsy may be performed and this may be diagnostic. What kind of Doctor specializes in cutaneous lupus? A Dermatologist specializes in diseases of the skin, hair and nails. Cutaneous lupus is one of hundreds of diseases that involve these areas. How is cutaneous lupus treated? Treatment of cutaneous lupus may include corticosteroid creams or ointments applied to the rash or lesions. If the lesion does not respond to cream or ointment, the doctor may prescribe injections of corticosteroids directly into the lesion. If a person has particularly wide-spread lesions, oral corticosteroid medications may be prescribed or the doctor may prescribe anti-malarial medications such as Plaquenil (hydroxychloroquine). In addition to these medications, sunscreens are an important part of the prevention of photosensitivity (where skin exposed to ultra-violet light reacts by developing a rash) reactions that may occur with cutaneous lupus lesions. 4. I have hair loss due to several scars on my scalp, all are about the size of silver dollars. Is there anything to help this kind of hair loss? If biopsy results indicate advanced scarring on the scalp, then there is little chance of bringing back significant amounts of hair. If, on the other hand, scarring is not prevalent, then treatment with corticosteroid and/or antimalarial drugs may be successful in getting the hair to return. When the disease is inactive, hair usually grows back. Will the drugs used to treat baldness help the hair loss due to lupus? Suppressing the disease with medication helps hair to regrow. 5. Is there anything that can be done to cover the lesions (sores) that show-up on my face? There are some commercially available make-ups. Covermark make-up is a type of make-up that's available that may be helpful in this situation. 6. Can lupus cause either hives or a sensation of burning in the skin? Lupus may cause hives. Itching can also occur but this is not a common finding. The sensation of itching is due to irritation of nerve fibers in the skin. If the irritation is more intense, it may cause a burning sensation. 7. How is cutaneous lupus different from systemic lupus? Cutaneous lupus is confined to the skin, whereas systemic lupus may involve not only the skin, but any of the other organ systems in the body. Can cutaneous lupus turn into systemic lupus? In approximately 10% of the cases of cutaneous lupus, it evolves and develops into systemic lupus. However, this can't be predicted or prevented from happening. 8. What is photosensitivity and what are photosensitivity reactions? Photosensitivity is sensitivity to the UV (ultra-violet) rays from the sunlight and other UV light sources. Photosensitivity reactions typically include a rash, but may also trigger fever, fatigue, joint pain and other symptoms of SLE. In some cases, sun exposure has resulted in the onset of kidney disease. 9. What is the difference between drug-induced lupus and systemic lupus? Systemic lupus is irreversible, whereas drug-induced lupus generally is reversible. The symptoms of drug-induced lupus generally DO NOT include: kidney involvement or central nervous system involvement What drugs are most commonly associated with DIL? There is just a short list of medications for which there is DEFINITE PROOF of an association with drug induced lupus. The list includes 5 medications. Procainamide (pro-can-a-mide) brand names Procan or Pronestyl used for heart rhythm abnormalities Hydralazine (hi-dral-a-zine) brand name Apresoline or Apresazide used for high blood pressure Isoniazid (i-so-nye-a-zid) brand name INH used for tuberculosis Quinidine (quin-i-dean) used for heart rhythm abnormalities Phenytoin, brand name Dilantin used for convulsive disorders (seizures). Are there other drugs that might cause DIL? The overwhelming majority of cases of DIL are due to one of the 5 drugs mentioned earlier. There are other drugs which might POSSIBLY be associated, but there is not yet definite proof of an association between them and drug- induced lupus. Check with your doctor to see if you are on any medication that might possibly explain your symptoms Should people diagnosed with SLE or Cutaneous lupus avoid taking the drugs associated with drug-induced Lupus? Most of the drugs associated with DIL can be safely used in people with SLE or cutaneous lupus if there are no suitable alternatives. How soon after taking the drug do the symptoms appear? Drug-induced lupus requires months to years of frequent exposure to a drug before symptoms appear. How soon after discontinuing the drug will the symptoms go away? It varies from days, to weeks, to months. Usually symptoms fade after six months. The ANA may remain positive for years. 10. What causes lupus? The exact cause of lupus is unknown. It is likely to be due to a combination of factors. For example, a person's genetic make-up and exposure to certain unknown trigger factors may provide the right environment in which lupus can develop. Is it hereditary? We suspect (but do not have scientific proof) that people inherit something from their parents that predisposes them to develop lupus. They are not necessarily pre-destined to develop lupus, but they may be more susceptible. At the present time, there are no genetic tests to determine who is susceptible and who is not. Several researchers are doing Linkage Studies to evaluate families in which more than one member has lupus. They hope to be able to identify a gene or genes that are responsible for lupus. Undoubtedly the resources of all of these groups will eventually be pooled, but there is much to be gained from the current phase of multiple independent efforts. Participation in multiple studies is encouraged. If you are interested in participating in this research or would like information, contact: Recruiter or Ms. Gail Brunner Oklahoma Medical Research Foundation Lupus Multiplex Registry and Repository 825 Northeast 13th St. Oklahoma City, OK 73104 TEL: 1- or Sisters With Lupus (SLE) Research Project Division of Rheumatology University of Minnesota 14-154 Moos Tower 515 E. Delaware St. Minneapolis, MN 55455 Tel: 1-800-51-LUPUS (1-) Dr. or Dr. Jane E. Salmon The Hospital for Special Surgery Cornell Medical Center New York, NY Tel: (212)606-1189 G. , MD V.A. Medical Center 1500 E. Woodrow Ave. , MS 39211 Tel: Dr. Betty Tsao UCLA School of Medicine Los Angeles, CA Tel: 1- Can I have my children tested? Testing isn't advisable in asymptomatic individuals. What can trigger lupus? It is believed that certain things may trigger the onset of lupus or cause lupus to flare. Trigger factors include: Ultra-violet (UV)light Certain prescription drugs Infection Certain antibiotics Hormones Although there is no scientific evidence, it is possible that extreme stress may play a role in triggering lupus. Is lupus stress related? We do not know for certain. There are many anecdotal reports (personal accounts) of lupus flaring during or after a stressful time, but this question requires further scientific study. Are flares related to hormones? We do not know for sure. There are many anecdotal reports(personal accounts) of lupus flaring with pregnancy, the menstrual cycle, birth control pills, and hormone replacement therapy. We suspect that hormones play a role, but we don't know precisely what the role is. Lupus has a 9:1 female to male ratio so it is likely that hormones play a role, perhaps by influencing the immune system. Also, we know that female hormones have a definite effect on lupus mice. Are there any medications people with lupus should avoid? There are no absolute contraindications to needed and appropriate medications for a person with systemic lupus. Your doctor should watch for allergic reactions to medications, and watch for any connection between flares and estrogen or oral contraceptives. People with lupus should be especially careful if they are prescribed sulfa antibiotics. These medications (Bactrim, Gantrisin, Septra) are often prescribed for urinary tract infections and may cause an increase in sun sensitivity and occasionally lower blood counts resulting in disease flares. Does lupus occur more often in certain geographical areas? No Is lupus related to pollution or toxic chemicals? We do not know. Can something in your diet cause lupus? We do not believe so. 11. Is there a test for systemic lupus? There is not a single diagnostic test for systemic lupus. 12. Why is systemic lupus so difficult to diagnose? It is difficult for a number of reasons: 1. Systemic lupus is a multi-system disease, and before a multi-system disease can be diagnosed, there have to be symptoms in many parts of the body and lab work that supports the presence of a multi-system disease. 2. Systemic lupus is also difficult to diagnose because it is a disease that does not typically develop rapidly, but rather slowly develops and evolves over time. Symptoms come and go and it generally takes time to gradually accumulate enough symptoms to indicate that a multi-system disease is present. The amount of time it takes to develop is highly variable; from several months to several years. 3. Systemic lupus is known as a Great Imitator because it mimics so many other diseases and conditions. 4. Systemic lupus is difficult to diagnose because there is no single diagnostic test for lupus. In fact, many people may have positive lupus test-particularly the anti-nuclear antibody test-and yet NOT have the disease. How is systemic lupus diagnosed? Physicians have to gather information from a variety of sources; past medical history, lab tests and current symptoms. They use a list of 11 criteria to help diagnose SLE. A person needs to satisfy at least 4 out of the 11 criteria before the diagnosis can be pin-pointed. (See list in Causes, Symptoms, Testing, Treatment) Some criteria, such as a biopsy diagnosis of kidney lupus, can carry more weight. Of the 11 criteria, 7 relate to symptoms, and 4 have to do with lab tests. The ANA test is used as a screening test for systemic lupus. We know that 95 % of people with SLE have a positive ANA. Therefore, if a person has many symptoms of systemic lupus and their ANA test is negative, that's generally regarded as pretty good evidence against lupus being the explanation for the symptoms they are having. If on the other hand, the ANA comes back positive, that IS NOT proof of lupus. The positive ANA is only an indicator, it is not diagnostic. A positive ANA can be found in a number of illnesses and conditions including: rheumatoid arthritis Sjogren's (show-grens) syndrome scleroderma (sklare-a-derm-a) Infectious diseases such as: mononucleosis malaria subacute bacterial endocarditis Autoimmune diseases including: autoimmune thyroid disease autoimmune liver disease Certain medications can also cause a positive ANA. About 20% of the general population when tested will have a positive ANA and not have any of the above mentioned illnesses. So, a positive ANA, by itself, is not diagnostic of any one particular disease and may be present in people who have no illness. Although it is often referred to as " a lupus test, " it is not like a pregnancy test where a positive result can mean only one thing. The ANA is only an indicator which points in several possible directions. A positive ANA satisfies only one criterion. A person would need to satisfy at least 3 additional criteria. 13. Confusion About Diagnosis I've seen a list of symptoms of lupus and I have just about every one. The doctor I went to doesn't think I have lupus, but he doesn't seem to know too much about it. How can I be sure I do or do not have lupus? Lupus is a very difficult disease to diagnose. Physicians use a list of 11 criteria to assist in the diagnosis. The criteria consist of symptoms and lab tests which tend to be specific to SLE. The list of 11 criteria is not to be confused with lists of common symptoms of systemic lupus, such as: fatigue, fever, weight loss, hair loss, nausea, Raynaud's phenomenon. These symptoms, could be due to numerous illnesses or conditions, and, therefore, are too vague to be included as diagnostic criteria. If a person has many of the symptoms of systemic lupus, the physician may suspect lupus is developing, and evaluate the patient to see if any criteria are met. If fewer than 4 criteria are satisfied, there is insufficient evidence to diagnose systemic lupus. A rheumatologist or a clinical immunologist may be consulted if you are looking for a specialist who has the expertise to diagnose and treat lupus. I am afraid I might have lupus and my doctor is going to miss something and end up diagnosing me with lupus too late. If I have it, I want to be diagnosed as early as possible. How can I make sure I am diagnosed earlier rather than later? Because lupus tends to develop slowly and evolve gradually over time, awaiting a diagnosis can be like waiting for a Polaroid picture to develop. If you are seen by a doctor at a point in time when only one or two criteria are satisfied, it is kind of like looking at a picture that is only one-quarter or half-way developed. No one looking at that picture can accurately identify what it is. Nor can they predict what it will develop into, or how long it will be before it is developed to the point where it's identifiable. Just as there is no good way to speed-up the development of a Polaroid, there is no way to hurry-up the diagnosis of lupus. The length of time it takes before lupus can be diagnosed is highly variable; it may take weeks, months or years; three years is not an uncommon length of time for many people to have symptoms before being diagnosed. In some cases, it can take as long as 10 years before enough evidence has accumulated to indicate that it is lupus. However, generally a doctor has a pretty good idea, though s/he may not be certain, that a person does or does not have SLE. The important thing is to learn the signs and symptoms of lupus and if you develop something new, let your doctor know so s/he can determine if you have yet satisfied enough criteria to be diagnosed. My doctor suspects I have lupus, but hasn't diagnosed me with it yet. I have a lot of joint pain in my hands and knees. Can anything be prescribed to give me some relief, or do I have to wait until I have a definite diagnosis before they can treat me? Sometimes, a trial of lupus medications is helpful, so discuss this with your doctor. My Doctor said my lupus test came back " borderline positive. " What does this mean? The screening test for lupus is called the ANA (antinuclear antibody). All lab tests have normal values. If a test result comes back and the value is at the upper limit of normal, this is often referred to as being on the border or borderline. These results are often very difficult to interpret; and the assessment of its importance is dependent on meeting other criterion. It is likely that a borderline positive ANA assumes more importance if other criteria are also present. I was told my ANA was positive, but I don't have lupus. My Doctor thinks I have a connective tissue disease. What does this mean? Connective tissue includes joints, tendons, cartilage, collagen, muscles and skin. There are a number of connective tissue diseases; rheumatoid arthritis, scleroderma, Sjogren's syndrome, Raynaud's phenomenon, vasculitis, polymyositis and dermatomyositis. It is not uncommon for a person to have symptoms that indicate a connective tissue disease, but not enough symptoms to clearly specify a particular disease. I was told my ANA was negative, and I don't have lupus. Is it possible to have lupus with a negative ANA? Approximately 95% of people with systemic lupus have a positive ANA. Only a small percentage have a negative ANA, and many of those have other antibodies detected in their blood (antiphospholipid antibodies, anti-Ro, anti-SSA), or their ANA converted from positive to negative following administration of steroids, cytotoxic medications or uremia (kidney failure). 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, 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. My doctor suspects that I may be developing lupus, but I don't satisfy enough criteria to be diagnosed. Is there anything I can do to slow its development or prevent it from occurring? If you are indeed developing lupus, there is no known way of arresting it. You can, however, be an active participant in your well being by: learning as much as you can about lupus so if you develop further symptoms, you will recognize them and notify your doctor, getting enough rest and exercise, eating a well balanced diet, avoiding excess sun exposure, managing stress more effectively, and following your doctor's advice. I was told my ANA was positive and I have a lot of pain, but my doctor thinks I have fibromyalgia and not lupus. What does this mean? Patients with positive ANA's and muscle and joint pain do not necessarily have lupus. Fibromyalgia, which is also common in women, sometimes explains the widespread pain. 14. I was diagnosed with systemic lupus. Are there any particular things I SHOULD or SHOULD NOT do with regard to: Diet - There is no such thing as a lupus diet. People with lupus should consider following a diet such as the American Heart Association's diet or the American Cancer Society diet. These are both well researched diets that have common components, they are low in fat, low in sodium, high in fiber, low in refined sugars. They are also balanced and include appropriate amounts of all the different food groups. If you find, however, that certain foods seem to aggravate or consistently cause a flare-up of your lupus symptoms, you should certainly avoid eating those foods. Vitamins - In general, a multi-vitamin is reasonable, but excess vitamins can be potentially dangerous and should be avoided. Exercise - Exercise is to be encouraged in people with lupus, particularly during a time when lupus symptoms are not pronounced. Walking, swimming, bicycling and other aerobic activities are good. But keep in mind that you want to exercise in moderation and avoid exercising to the point of exhaustion. Regular exercise will help you function better and improve fatigue and your sense of well being. Fatigue - When your lupus is active, you very often will suffer with fatigue. It is important to recognize this as a signal that your body needs to rest. It is essential that during a time of flare you get sufficient rest. This may include naps during the day, modifying your schedule as well as restructuring your priorities. Adjusting to fatigue often requires that you learn how to pace yourself in order to accomplish the things you want to accomplish throughout a day. Regular aerobic exercise that achieves enhanced physical conditioning, usually helps fatigue. Avoid strenuous exercise if you have fever or other signs of VERY active disease. Sleep - Get plenty of it, but keep in mind that when you are coming out of a flare you do need to gradually resume your normal activities slowly over a period of time. This may require naps during the day; a brief cat nap can be of tremendous help. It's important to get enough sleep at night and to pace yourself during the day so you don't exhaust yourself. Medications - Be sure and take your medications as prescribed by your doctor. If you develop any side effects make sure you let your doctor know what they are. Make it a point to understand what the medication you take is supposed to do so you will be able to recognize if it is indeed working. And if it's not, then let your doctor know. Work schedule -The type of work schedule someone with lupus can accommodate is variable. Many people with lupus are able to work a full-time job, others find they have to cut back to part-time. Some people find they are unable to work and some apply for and receive disability. 15. Is there a cure for lupus? At the present time there is not a cure for lupus, but there certainly is effective treatment. 16. The treatment of lupus How is lupus treated? The majority of symptoms of lupus are due to inflammation and so the treatment is aimed at reducing that inflammation. This can be done through a number of different medications. There are four families of medications used in the treatment of lupus. They include: Nonsteroidal Anti-inflammatory Drugs - drugs such as Ibuprofen (Advil & Motrin), Naproxen, Naprosyn (Aleve), Clinoril, Feldene, Voltaren, to name a few. Corticosteroids - drugs such as prednisone, prednisolone, medrol, deltasone, cortisone and others. Anti-malarials - these have been found to be effective in treating the joint pain, skin rashes and ulcers that some people develop on the inside of their nose or mouth. Plaquenil (hydroxychloroquine) is probably the most commonly prescribed anti-malarial drug. There is, of course, no known relationship between lupus and malaria. The fourth family of medications, immunosuppressants/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 a flare that effects 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). The majority of people who have lupus are treated with the first three families of medications, the nonsteroidal, corticosteroids and the anti-malarial drugs. These may be used either alone or in combination. Since individuals respond differently to medications, it may take time before you are able to determine, through trial & error, which medication at which dose provides relief of the symptoms of lupus. Frequently physicians will try one medication see how it works and if it doesn't work they may have to change the dose or switch to another medication. 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 ineffective. What can I do about the weight gain brought on by the prednisone? Increased appetite is a well recognized side effect of corticosteroid therapy. Often times, just being aware that this increase in appetite may occur with the steroid therapy, is the first step towards managing the potential weight gain. If you have to go on steroids or if you have to increase your dosage of steroids, you may want to consider planning out a healthy diet during the time you're taking steroids and making sure that you stick to it. During those times, however, when you're really hungry, here are some things you can do to combat the munchies: Drink a large glass of low sodium vegetable juice cocktail Eat a bowl of air popped or low fat microwave popcorn Eat a plate of raw vegetables dipped in fat free sour cream If you can, go for a walk Drink a cup of decaffeinated flavored coffee with milk These are low fat substitutions which can reduce your overall caloric intake and hopefully curb your weight gain. Taking steroids can also increase weight gain. You can help to cut down the amount of fluid retention by reducing your sodium and/or salt intake. This can be accomplished by avoiding processed or convenience food whenever possible. If you are going to be eating convenience or processed foods check the label and make sure that no item contains more than 140-200 mg of sodium per serving. Or if you are eating a whole frozen dinner, for example, try and stay between 500 and 700 mg of sodium. If you can avoid processed meats such as luncheon meats, sausages or bacon you'll be reducing your sodium intake and that's good. If you have a choice between fresh or frozen vegetables or canned, stay away from the canned vegetables and choose fresh or frozen because they are lower in sodium. Support groups and commercial weight loss programs can assist in weight control efforts. Do you recommend any herbs or vitamins for the treatment of lupus? We do not recommend any specific herbs or vitamins. There is a great deal of interest in herbal medicine and vitamin therapy, however, this is an area that really requires further scientific study. There are many anecdotal reports of people who took a certain vitamin or certain herb and felt that it helped improve their lupus. However, you have to be careful because some herbs have been shown to contain dangerous contaminants. With vitamin therapy, you have to be careful of not overdosing. In general if you are concerned about having adequate quantities of vitamins in your diet, you can take a single multi-vitamin per day. Calcium supplements, to prevent osteoporosis (bone thinning), are a good idea. Patients who are prescribed methotrexate are often told to further supplement their diet with folic acid. 17. Is massage safe for people with lupus? Yes. If you find that it helps, then good. If you find that it is not helpful, then you should avoid it. 18. Is acupuncture helpful to people with lupus? There have been anecdotal reports from people stating that they received acupuncture and believed they benefitted from it. This an area of alternative medicine which requires further controlled scientific studies before we can say whether or not acupuncture is helpful in treating the symptoms of lupus. However, most physicians are not impressed with the benefits of acupuncture. 19. I have heard that dental fillings may trigger lupus. Is there anything to this? At the present time, we do not have any scientific data that indicates that dental fillings may act as a trigger of lupus. In fact, it is highly unlikely that dental fillings aggravate or cause SLE. 20. I have heard that hair dyes may trigger flares in lupus. Does this mean I should stop dying my hair? One study that indicated an association between the use of hair dyes and lupus symptoms, but subsequent studies found no association and no recent evidence has been reported. The initial study findings are of uncertain significance and most physicians do not feel that hair dye is risky for people with lupus. 21. Flares How can I tell if my lupus is active? When a lupus flare comes on, people will usually notice a return of the symptoms they experienced previously, but sometimes the onset of new symptoms. These may include, but are not limited to: fever, achy joints, swollen joints, an increase in fatigue, perhaps a loss of appetite, rashes, hair loss, sores or ulcers in the mouth or nose. A temperature over 100 degrees, not due to an infection, is often a helpful sign. When should I call the Doctor? You should call the doctor about any change in symptoms or worsening of your lupus as soon as possible. You should also be aware that there are certain symptoms that may require that you see your doctor immediately. These symptoms or signs include the following: Blood in your stool or vomit, you should call your doctor and let him/her know immediately. Severe abdominal pain Chest pain Seizures New onset of a fever or if your fever is much higher than it usually is Excess bruising or bleeding anywhere on your body. Confusion or mood changes Or if you have a combination of symptoms such as severe headache with neck stiffness and also fever. This combination of symptoms could be serious and you need to let your doctor know about it. There are other reasons why you should call your Doctor. For example, if the doctor has put you on a new medication and you've been taking it as prescribed and you've taken it for the period of time that s/he prescribed and your symptoms are no better or if they are worse, you need to let the doctor know. How long will a flare last? How long will a remission last? There is no way of predicting how long a flare will last when it comes, nor is there any way of predicting how long a remission will last when it comes. It is frequently said about lupus that the only thing that is predictable about lupus is it's unpredictability. So we have no way of forecasting how long a flare will last or how long a remission will last. Sometimes changes in symptoms or lab tests predict future changes. I've had lupus for 2 years and haven't had a remission yet, is this possible? Well, yes. The course that lupus takes is highly variable. Some people will have a course where their lupus flares-up and then simmers down and goes into remission. On the other hand, some have a more chronic course where they have a chronic state of flare and have symptoms day-in and day-out. 22. Is lupus a fatal disease? Lupus is not a universally fatal disease. In fact, today with close follow-up and treatment, 80-90% of the people with lupus can expect to live a normal life span. Lupus does vary in intensity and degree, however, and there are people who have a mild case, there are those who have a moderate case and there are some who have a severe case of lupus, which tends to be more difficult to treat and bring under control. For people who have a severe flare-up, there is a greater chance that their lupus may be life-threatening. And we know that some people do die of this disease and because of that we have a tremendous amount of respect for the potential of this disease. However, the majority of people living with lupus today can expect to live a normal life-span. People frequently read in the literature that, 80-90% of people with lupus live for more than ten years. Unfortunately, this is often misinterpreted as- people with lupus live for only ten years. Let us clarify this. The studies that were done to arrive at this figure where done over a period of ten years. They followed patients with lupus from the time of diagnosis for ten years. At the end of these studies they were able to conclude that 80-90% of the people enrolled were still alive. What this study did not look at is what happened in year 11, 12, 15, 20 and so on. We know that there are many people living with lupus and have been living with lupus for 15, 17, 19, 25, 27, 30 and 40 years. This is not a disease that is universally fatal to all. The majority of people with lupus today can expect to live a normal life-span. When people die of lupus, what do they usually die of? Overwhelming infection and kidney failure are the two most common causes of death in people with lupus. 23. Lupus and cancer Is lupus a form of cancer? No, lupus is not a form of cancer. It is an autoimmune disease. Are people with lupus more likely to develop cancers? People with lupus are no more likely to develop cancer than are people in the general population. However, people who have received certain chemotherapy drugs do carry the added risk of developing cancer sometime later in life. Are there any special considerations regarding treatment of cancer in people with lupus? Cancer can be treated in many ways; with surgery, radiation and/or chemotherapy. All people with lupus having surgery for cancer, should be followed closely by their personal physician and/or the rheumatologist to evaluate the activity of their lupus throughout the course. For patients receiving steroid therapy and surgical procedures, their steroid dosage will have to be adjusted during the time just shortly before surgery and then tapered slowly over time after surgery. If a person is scheduled for surgery and they take nonsteroidal anti-inflammatory drugs or aspirin, any of which may effect their clotting time, these medications will need to be stopped prior to surgery in order to minimize bleeding. Chemotherapy usually doesn't present any particular problems and can in turn treat active lupus. 24. Lupus Research Is there any research being done on lupus? Yes, there is a good deal of interest in lupus. Research can be divided into two types: basic or clinical. Much of the lupus research is considered to be basic, where scientists attempt to develop or refine theories (concepts, beliefs, principles) of how the body works and how the immune system functions. Basic research is conducted in the laboratory and generally does not involve the use of human subjects. We are lucky to have animal models of SLE (mice with lupus) so that research into the cause of lupus and better treatments can be investigated more easily. Clinical research involves the study of humans and how they act or react to certain factors. It includes applying or testing theories and evaluating their usefulness in solving clinical problems. Each year the American College of Rheumatology publishes a listing of summaries (abstracts) of research projects. In 1995, there were over 200 research abstracts listed that pertained to lupus. The majority of the studies were basic research. Currently, we are aware of many ongoing clinical studies that are using patients to determine if there is a genetic linkage in lupus (for details, see question 10). We are also aware of a multi-centered clinical trial which is evaluating DHEA, a male hormone, to see if it can improve clinical outcome and disease symptoms in women with systemic lupus. There are also clinical trials being conducted using Toleragens,TM which are molecules designed to tolerize or shut-off B cells (antibody producing white blood cells) that produce Anti-DNA antibodies. Anti-DNA antibodies are felt to be responsible for causing many of the symptoms of SLE, especially kidney disease. It is hoped that suppression of these antibodies will result in improvement of disease activity and decrease the need for immunosuppressive therapies. Where is lupus being researched? Lupus research is conducted by both public and private organizations, companies, universities and colleges, as well as the federal government; which includes the National Institutes of Health (NIH), the Department of Veterans Affairs (VA), the Centers for Disease Control (CDC), the Food & Drug Administration (FDA), and the Military. The NIH contains the National Institute for Arthritis, Musculoskeletal and Skin diseases. This is commonly referred to as NIAMS, and it is here where much of the federally funded research related to lupus takes place. Where does the NIAMS lupus research take place? The NIAMS is within the National Institutes of Health in Bethesda, land and research occurs there as well as at other major medical centers around the country. In April 1994, NIAMS announced the establishment of the first two Specialized Centers of Research (SCORs) in systemic lupus erythematosus. The new SCORs are located at the Hospital for Special Surgery, Cornell Medical Center in New York City, and at the University of North Carolina, in Chapel Hill. Federally funded research at these specialized centers will permit basic and clinical researchers to work together to focus on one disease. · The Hospital for Special Surgery Cornell Medical Center in New York City, NY Dr. Elkon will focus on genetic, cellular and molecular causes of SLE in order to develop new approaches to treatment. His team will also investigate antiphospholipid antibodies and how they activate the clotting mechanism which may result in miscarriages, strokes and blood clots. · University of North Carolina at Chapel Hill, NC Dr. Eisenberg using animal models (mice), will focus on how the immune system regulates the production of autoantibodies in SLE. In January 1996, NIAMS announced the beginning of the first clinical trial on the safety of estrogen in lupus erythematosus. The clinical trial, known as SELENA (Safety of Estrogen in Lupus Erythematosus National Assessment), is being funded by NIAMS, the NIH Office of Research on Women's Health and the NIH Office of Research on Minority Health. Major research centers in New York City, Baltimore and Los Angeles are collaborating, including: · Hospital for Joint Diseases New York, NY Dr. Jill Buyon · s Hopkins University School of Medicine Baltimore, MD Dr. Petri · Hospital for Special Surgery/Cornell Medical Center New York, NY Dr. Sammaritano · St. Luke's/Roosevelt Medical Center New York, NY Dr. Joan Merrill · UCLA Medical Center Los Angeles, CA Dr. Ken Kalunian These researchers are conducting randomized double-blind, placebo-controlled studies on the effects of oral contraceptives on disease activity in women with SLE and on the effects of hormone replacement therapy (HRT) with estrogens and cyclic low-dose progestins in post-menopausal women with SLE. In early 1996, the NIAMS established The Lupus Registry and Repository to study not only people with lupus, but also their families in order to identify genes that determine susceptibility to the disease. The high prevalence of lupus among relatives of lupus patients suggests a genetic component for the disease. However, genetic studies of lupus to date have been incomplete. The Lupus Registry and Repository is located at: · Oklahoma Medical Research Foundation Oklahoma City, OK Dr. Harley will direct this extensive project. He and his associates will collect and update clinical, demographic and laboratory data on all patients with lupus and their families for the Lupus Registry. They will store blood, cells, and DNA from these individuals in the Lupus Repository. They are seeking lupus patients who have two or more family members who have been diagnosed with the disease. Families who qualify for the study receive a blood sample collection kit, a consent form and a questionnaire. A blood sample is collected and completed materials are sent to Dr. Harley and his associates for evaluation. Patients or physicians interested in participating should contact: Recruiter or Ms Gail Bruner Oklahoma Medical Research Foundation 825 Northeast 13th Street Oklahoma City, OK 73104 1- or Neonatal Lupus Registry Dr. Jill Buyon is the director of the NIAMS?HJD Neonatal Lupus Registry. The Registry includes identifying and diagnostic information on mothers and their affected infants. The purpose of the Registry is to facilitate access to patients by investigators conducting basic, clinical or epidemiological research. Please contact: Jill P. Buyon, M.D., Director or Diane Chin, Coordinator NIAMS/HJD Neonatal Lupus Registry Hospital for Joint Diseases 301 East 17th Street, Room 1606 New York, NY 10003 Tel: Fax: NIAMS is increasing research into the following: · causes of lupus · mechanisms of tissue injury · the antiphospholipid syndrome (APLS) · why lupus is more common in women and certain minorities For further information on NIAMS research contact: NIAMS Information Office of Scientific & Health Communications NIAMS/NIH Bldg 31, Room 4C05 Bethesda, MD 20892 TEL: Does the Lupus Foundation of America do research? A primary focus of the LFA is to encourage research related to the causes, treatments, prevention, and cure of lupus and to directly sponsor seed research monies to test new approaches and develop experimental prototypes that may be presented for larger-scale funding through public or other sources. This research program is supported exclusively through donations from the LFA's nearly 100 constituent chapters, private foundations or corporations, and the concerned public. It is the LFA's hope that this investment in research will produce new information which may directly lead to much larger projects and substantially increased funding from other sources, particularly the National Institutes of Health, in the future. The LFA and its chapters contributed more than $1,000,000 for lupus research in the past two years. How do I find out more about the LFA's Research Program? Each year the LFA distributes requests for proposals (RFP) to teaching centers, hospitals, educational institutions and researchers across the country. A primary focus of the organization is to encourage research related to the causes, treatments, prevention, and cure of lupus and to directly sponsor SEED research monies to test NEW approaches and develop EXPERIMENTAL prototypes that may be presented for larger-scale funding through public or other sources. Grants are awarded for up to two years to junior investigators (defined as academic rank of Assistant Professor or below) to support biomedical research related to finding the cause(s) and/or cure for lupus erythematosus. Researchers interested in the LFA grants program can contact the LFA National Office at and ask to be placed on the RFP mailing list. Applications are mailed in early December. The deadline for applications is April 1st of each year. How close are we to a cure? It is difficult to know. Just as an automobile mechanic must understand how a car engine works before he/she can fix it, before we can figure out how to fix lupus we must have a broader and more in-depth understanding of how the immune system works and we must continue to look for other causes such as a virus that can cause SLE. Through research, we establish new knowledge and a better understanding of how the immune system functions. We know our knowledge is incomplete, but we don't know how much more we need before we will fully understand what goes wrong in lupus and why. So, we don't know how close we are to a cure because we don't know really where the finish line is. There is a great deal of interest within the scientific community in mastering all the complexities of the immune system. Because of this, there is hope that we will one day understand just precisely what does go wrong with lupus and why. We will then have a clearer idea of how to go about curing this disease. 25. 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 general recommendation is if you go to a place which is affiliated with a medical school, a university hospital for example, that kind of health care institution will have faculty on staff which very often are involved in research. People who are involved in research are generally the most up-to-date on the latest advances in diagnosis and treatment of lupus. So, these places 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. 26. What can I expect in the future? Will I be able to have a family? Unless there is moderate to severe organ involvement or if a person must take immunosuppressive medication which would place the mother at risk, there is no absolute reason why a person with lupus should not get pregnant. You must be aware, however, that there is an increased risk of disease activity either during or three to four weeks after pregnancy and therefore all women with lupus who are pregnant must be closely monitored by an obstetrician who is thoroughly familiar with high risk pregnancy as well as their lupus Doctor. Statistically, 50% of all lupus pregnancy are completely normal, 25% will deliver normal babies prematurely and the remaining 25% will experience either a miscarriage or a fetal death. Years ago women with lupus were advised not to have children. However, today with the advances in diagnosis and treatment of lupus, unless there is moderate to severe organ involvement, there is no absolute reason why a person with lupus should not get pregnant. Will I be able to continue working full-time? Many people who have lupus are able to continue working full-time. However, since lupus affects people to varying degrees there is no real way of predicting what your course of lupus will bring in the future. Some find they have to cut back to part-time or try modifications of their work environment or schedule, some find they have to take a leave of absence for a period of time, others may find their lupus activity is such that they are unable to continue with working, and some may go on disability. Will I live long enough to see my children grow up? The majority of people living with lupus today, in fact 80-90% of them, can expect to live a normal life-span. Will I become crippled and end up in a wheelchair? People are frequently concerned that the arthritis associated with lupus will result in crippling deformities. Lupus arthritis generally does not cause deformities of the joints. Occasionally, avascular necrosis of bone, related to steroids and lupus, may occur and require total hip or knee replacement surgery. 27. Is there anything I can do to alleviate the pain when the pills don't seem to work and I can't get in to see the doctor for a few days? Some people find relief from heat, some people find relief from cold. Others find that if they can find a distraction to decrease their awareness of pain, this is beneficial. Reference: " Control Your Pain: 144 Sure-Fire Strategies for Reducing the Pain of Lupus, " by H. , Ph.D. Available through the Lupus Foundation of America. 28. Lupus and breast implants I have silicone breast implants and am being tested for lupus. Is there any connection between silicone implants and lupus? There has been a great deal of interest in this issue and to date there have been numerous studies that have looked at this question. However, none of these studies has shown a clear association between silicone breast implants and the development of lupus disease. Further studies are needed. If I have my implants removed, will my lupus symptoms improve, will the lupus go away? We don't know. There have been reports of women who had silicone breast implants removed and their symptoms improved. On the other hand, there have been cases where symptoms have not improved after removal. References: To receive the most recent information on breast implants contact the Food and Drug Administration (FDA) Breast Implant Information Line at 1- 29. Lupus anticoagulant I was just diagnosed with the lupus anticoagulant. Does this mean I have systemic lupus? The lupus anticoagulant is classified as a type of antiphospholipid antibody which was first detected in people with lupus. It was later learned that many people who do not have lupus, also produce these antibodies. In fact, in most studies, greater than 50% of the people who have antiphospolipid antibodies DO NOT have lupus. So, just because a person has the lupus anticoagulant antibodies does not necessarily mean that they have or will develop systemic lupus. There is a syndrome called the " Primary " Antiphospholipid Syndrome (PAPS). This term is used to describe people who do not have any signs or symptoms of SLE but produce antiphospholipid antibodies such as the lupus anticoagulant and/or anti-cardiolipin antibodies and experience problems with blood clots, miscarriages, or thrombocytopenia (low platelets). People with PAPS do not have lupus. Is it possible to have these antiphospholipid antibodies and not have systemic lupus? Yes. Although these antibodies were first discovered in people who had lupus, it was later learned there are many people who produce these antibodies who do not have systemic lupus. Is it possible to have antiphospholipid antibodies and not have symptoms related to them, ie. blood clots, miscarriages or low platelets? Yes. In fact, most people with these antibodies DO NOT and will not have symptoms related to them. 30. Lupus and multiple sclerosis I was diagnosed with MS 3 years ago and now my doctor thinks I may have lupus. Is there a connection between MS and lupus? Multiple Sclerosis and lupus are both autoimmune diseases. They are diagnosed and treated in very different ways. There is no direct connection between the two, however, lupus, known as the great imposter, can sometimes mimic or imitate the symptoms of MS. My MRI from 3 years ago showed plaques. Is there anything on the MRI of people with lupus of the nervous system that is diagnostic for CNS lupus? Diagnosis of CNS lupus is difficult as there is not one specific diagnostic test to detect nervous system involvement in lupus. The abnormalities seen on the MRI scans are not specific for systemic lupus. In other words, they could be due to a number of things. The findings on these specialized tests and sometimes other tests such as a brain wave test (electroencephalogram, EEG) and a spinal tap have to be considered along with clinical and laboratory findings in establishing a diagnosis of CNS lupus. 31. My child has lupus. What is the prognosis? The prognosis for children and adolescents with systemic lupus has improved dramatically over the past twenty years. With modern therapy, children do nearly as well as adults. References: Contact the LFA for articles on childhood lupus 32. What happens in autoimmune diseases like lupus? The immune system is designed to protect and defend the body from foreign intruders (bacteria, viruses). You can think of it like a security system for your body. It contains several different types of cells, some of which function like " security guards " and are constantly on patrol looking for any foreign invaders. When they spot one, they take action, and eliminate the intruder. In lupus, for some reason and we don't know why, the immune system loses its ability to tell the difference between a foreign intruder and a person's own normal tissues and cells. So, in essence, the " Security Guards " make a mistake, and they mistakenly identify the person's own normal cells as foreign (antigens), and then take action to eliminate them. Part of their response is to bring antibodies to the site which then attach to antigens (anything that the immune system recognizes as non-self or foreign) and form immune complexes. These immune complexes help to set in motion a series of events that result in inflammation at the site. These immune complexes may travel through the circulation (blood) and lodge in distant tissues and cause inflammation there. 33. Is lupus like AIDS? No. In AIDS (Acquired Immune Deficiency Syndrome) the immune system is under active, it is deficient. In lupus the immune system is overactive, it produces large quantities of antibodies. AIDS is contagious, lupus is not. The vast majority of people diagnosed with AIDS die from their disease. The vast majority of people with lupus can expect to live a normal life-span. 34. Is lupus contagious? No, not even through sexual contact. 35. Financial Assistance Can the Lupus Foundation of America provide financial assistance to individuals in need? Unfortunately, the Foundation is not set-up to provide individuals with financial assistance. We may, however, be able to refer you to other agencies or organizations that can be of help. Can the LFA help me pay for my expensive prescription medications? If you are having difficulty paying for medications to treat your lupus, there may be assistance available through the Pharmaceutical Researchers and Manufacturers Association (PhRMA). PhRMA sponsors a program which provides prescription medications free to physicians whose patients might not otherwise have access to necessary medications. The Directory of Prescription Drug Patient Assistance Programs lists member companies of PhRMA that participate, medications covered, and eligibility criteria. If you meet the criteria, the pharmaceutical company will send the medication to your doctor, who will dispense it to you. To request a free copy of the Directory, call 1-. Consult your physician to determine if you are eligible to access any medications through this program. Does the Lupus Foundation of America have a scholarship program to help students with lupus pay for college/training? The LFA does NOT have a scholarship or any other form of financial aid available to students. The LFA DOES have the Finzi Memorial Student Summer Fellowships for Research Related to Lupus Erythematosus. This program is designed to encourage young science majors (undergraduates, graduate and medical students) to participate in lupus related research under the supervision of an established investigator. Preference is given to applicants who have already earned a college degree. The application deadline each year is February 1st and awards are announced each year in April. For further information and application materials, contact the LFA National Office at You also may want to contact your county Department of Social Services to find out about available services in your area. 36. Can people with lupus qualify for Social Security Disability? The Social Security Administration recognizes systemic lupus erythematosus as a potentially disabling illness and includes SLE in their listing of impairments. What do I need to do to apply? First ask your doctor if in his/her opinion you are disabled according to the definition used by the Social Security Administration. Disability definition: the inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months. Second, contact your nearest Social Security Administration office and request all information (brochures/pamphlets) and forms to apply for SSDI (Social Security Disability Insurance). How do I know if I am eligible for Social Security Disability? SSDI is an insurance plan supported through payroll deduction (FICA withholding tax) that covers most workers in the U.S. Eligibility is based on prior work. You must be under age 65, have worked long enough and recently enough to be eligible to apply. What if I am disabled but have not worked long enough or recently enough to be eligible for SSDI? There is another disability program, Social Security Income (SSI), which provides benefits to the needy and disabled who have not worked long enough or recently enough to be eligible for SSDI. I've heard that it is almost impossible to get disability. Is this true? Applying for and receiving Social Security Disability can be difficult and time consuming; it can take up to a year or longer. You must prove your disability. It requires work on your part to manage your claim and to make sure that your application is COMPLETE. It is crucial that you provide thorough information so the people who review your claim fully understand the impact your lupus, and other illnesses if present, have on your ability to work, and your ability to perform daily functions at home. The Social Security Administration (SSA) must justify the disability payments they make. If the forms submitted do not prove to their satisfaction that you are disabled, then the SSA can not justify paying benefits, and you will be denied. On the other hand, a claim that is well documented and supported with complete information likely will provide the justification needed for payment of benefits. If you are denied, do not take it personally. A denial is only a notice that the information you provided does not prove you are disabled. There is an appeals process. We encourage everyone to follow thorough with the appeal. It is an opportunity for you to submit further information to prove you are disabled. Reference: Disability Handbook for Social Security Applicants. To assist people in completing their application for disability, the Lupus Foundation of America has available the Disability Handbook for Social Security Applicants. Written by attorney , this recently revised and expanded Disability Handbook has two parts. The Disability Workbook for Social Security Applicants is written for the claimant (disabled adult workers under the age of 65) to use as a guide when applying for Social Security Disability Insurance (SSDI) benefits. The second part, The Disability Evaluation Guide for People with Systemic Lupus Erythematosus, is written for the applicant's physician(s). This user-friendly handbook, bound in an easy to use three-ring binder, walks you through the disability application process and includes all the worksheets needed to complete an application in a timely manner. (205 pp., revised and expanded in 1995.) Available through the LFA, National Office for $32.95 (including shipping and handling), and may be available through your local chapter at a discount. I've just been denied disability benefits by Social Security. What do I do? Don't take it personally. A denial is only a notice that the information you provided so far does not prove you are disabled. There is an appeals process. We encourage everyone to follow thorough with an appeal. It is an opportunity for you to submit further information to help prove you are disabled. You must appeal within 60 days. If your first appeal is denied, then you can pursue a second appeal where you will have a hearing before an administrative law judge. We generally recommend that if you progress to this level that you have an attorney familiar with disability represent you. Reference: Disability Handbook for Social Security Applicants. How can I find an attorney who specializes in disability law? The National Organization of Social Security Claimants Representatives has a geographic listing of lawyers that specialize in disability cases. They can refer you to an attorney in your area. You may reach them by calling: 1- **************************************************************************************************************************************************************************************************** From: cjlw61 Sent: Wednesday, April 07, 2004 11:15 AM To: LUPIES Subject: New member confused and have lots of questions Hi everyone! I just wanted to tell you thanks for the warm welcome to the group. My name is Carol and I am 42 married and have 4 children a dog and a cat. I love art and sculpt dolls from polymer clay as well as lots of other things. I was having pain in my feet and muscle fatigue, tiredness and a really fuzzy brained feeling. She said she wanted to start me on 2 different meds. Plaquenil and Choline. I have read about these drugs and the side effects are scary. I am having a hard time with wondering if I really have lupus and I have so many questions. If I take these drugs are they going to help or just make me worse. Is there more natural ways to go? I hear all these stories of people who take these natural drugs and are healed. If this is so why don't more people use them. I'm sorry I am so long winded. Is this normal to feel this way. I always felt so good about the fact I didn't have many health problems. Now I find myself crying over how to deal with this all and how to help my family understand it. Thanks for any help you can give! Get your FREE personalized email signature at My Mail Signature! Quote Link to comment Share on other sites More sharing options...
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