Guest guest Posted August 14, 2004 Report Share Posted August 14, 2004 Welcome Sue Ellen, This is a nice, friendly and informative group. I hope you don’t have lupus but fibro is plenty bad enough. I have lupus, fibro, arthritis, osteoporosis, degenerative disk disease, cognitive dysfunction, TMJ dysfunction, IBS, interstitial cystitis and I probably forgot something. My name is Cheryl and here is some info for you to digest. 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! From: Sue-Ellen Sent: Saturday, August 14, 2004 5:25 PM To: LUPIES Subject: Intro My name is Sue-Ellen. I am 40 years old. I live in rural ok with my husband of 19 years and our 18 year old son. We also have 1 dog, 4 cats, 5 guinea fowl, 8 goats and about 100 chickens. Until one year ago I had always lived in a big city and am very much enjoying living in the country. I have been sick since May 2001 with fibromyalgia. Probably the biggest suspicion I have about the Lupus is my very red face that looks like all the butterfly rash pictures I have seen online.Sue-Ellen 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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