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Doctors' Answers to "Frequently Asked Questions" - Lupus Disease


These comments are made for the purpose of discussion and should NOT be used as recommendations for or against therapies or other treatments. An individual patient is always advised to consult their own physician.

Lupus - Protenuria and positive ana (with cholinergic urticaria) [posted 1/7/99]
Question: I was diagnosed tentatively with lupus because of a positive ana and proteinuria. There have been no positive blood findings other than the ana - and the tests have been extensive. I had a full kidney workup, which showed no abnormalities. The proteinuria is slowly going down and the positive ana continues. My ana can go between 400 and 3200. I have had a full lupus workup and aside from what is listed I have suffered from cholinergic urticaria relentlessly for over one year. I am now also experiencing small blister-like skin eruptions, which itch intensely and produce a severe red rash when itched. Can any other disease produce these symptoms? Is it possible to have these results in the absence of serious disease? I am 48 years old and going through menopause. At the time this problem began I was also diagnosed with a 6 cm hydocelphinx, which was surgically removed. I also have a high cholesterol reading.

Answer: I'd get a biopsy to see. If they are lupus, they will usually show.

Lupus  & Immuran Treatment [posted 11/17/98]
Question: My husband has lupus and other problems. Has had low platelet counts for a few months. Was put on imuran in July and has gone from 1 tablet per day to 4 tablets during this time. We were told because of his enlarged spleen. Everything I read about imuran says that it can cause low platelet counts, so why would the doctor put him on it and keep increasing if it might run the risk of lowering the counts even more? Thanks.

Answer: To decrease the lupus which is the cause of his platelet problem. Successful treatment with immuran will increase the count in this circumstance

Lupus Disease [posted 11/17/98]
Question: I was diagnosed with Lupus several years ago after being placed on Procainamide for a heart rhythm disturbance. After developing hives and a very high ANA titer (1:3200) I was taken off Procan and placed on Amiodarone for a period of 1 year. At that time, I became very ill with Hyerpthyroidism. I had a thyroid storm and was on 24- tablets of PTU daily for about three months. After about 1 year of PTU my thyroid quit functioning and I was placed on Synthroid 75 daily and I am doing well with that. Prior to the thyroid problems, I was placed on Plaquenil for the lupus which I 'm not crazy about taking. I feel ok now except I continue to have symptoms of lupus such as joint pain (severe), photo sensitivity, swelling of hands, elevated sed rate ( as high as 83) . My question is do you think I really have lupus or is it something else that may be being missed? Should I stay on the Plaquenil. I realize that Lupus is a very hard thing to diagnose but I'm really getting worried! Help.

Answer: Drug induced lupus usually abates after stopping the drug. There are other tests to be done such as Smith Antibody, etc. Are you seeing a rheumatologist?

Lupus Disease
Question: I recently found out that I have a very mild case of lupus. I only have redness under my eyes. Before I go to a specialist, I would like to know a little bit more about my particular type of lupus. I am told that there are many different types.

Answer: Lupus is the shorthand name for systemic lupus erythematosus. This is an autoimmune disease and varies widely from individual to individual. Mild cases may involve only the skin(discoid lupus), and more severe cases may involve every organ in the body--potentially to death. The cause of lupus is not known, but it seems to be related to confusion in the immune system between what is foreign and what is not. There is a clear familial predisposition as well as increased numbers of women affected compared to men. The disease is characterized by waxing and waning clinical course; that is periods of intense disease activity and periods of relative quiet. The diagnosis is based on several criteria. In 1982, there were criteria established for the diagnosis of lupus. These were in Arthritis Rheum 25:1271,1982. These are briefly 1. Malar rash. 2. Discoid rash. 3. Photosensitivity. 4. Oral ulcers. 5. Arthritis. 6. Serositis(inflammation of the pleura etc.) 7. Renal disorder. 8. Neurologic disorder. 9. Hematological disorder. 10. Immunologic disorder 11. Antinuclear Antibodies. Treatment varies widely on the number and severity of organs and organ systems involved. Lupus can remit after a time on its own. It also can progress to kidney failure, strokes, seizures, and death. Most patients have a mild course, but each one is completely individual.

Lupus Disease
Question: I am interested in information on the treatment of lupus disease. It is my understanding that it is not curable, is there any method for treating the symptoms?

Answer: Systemic lupus erythematosus is a disease of unknown cause. The damage to the body is caused by "autoantibodies"; that is, antibodies to ones own tissues and organs. We currently have no "cure" since we do not currently know the cause or causes. However, treatment of the disease is usually aimed at decreasing the autoimmune response. This is done by decreasing the effect of the immune system. Treatment ranges in response to the disease. That is, aggressive treatments for severe and life threatening disease and less severe treatments for less severe disease. You should contact your physician to discuss different treatment options.

Lab Report
Question: Can you explain this lab report to me?

ANA with a titer 1:640 homogenous pattern and titer 1:320 atypical speckled. CBC with hemoglobin 12.8, hematocrit 36.3, platelets 302k, white blood cells 7.lk, MCV86. Differential count showed 58t polys, 2 bands, 37 lymphs, 3 monocytes. Erythrocyte sedimentation rate 5. Total IgG 1080 mg/deciliter.

Does this sound like my 18 year old daughter could have lupus? She has a disfiguring rash all over her face, neck,and scalp and has had it for four years.

Answer: The diagnosis of sytemic lupus is dependent on several factors. These include the presence of a skin rash, arthritis, anemia or blood disorder, positive blood test, serositis(inflammation of the pleura-lung lining or pericarditis), oral ulcers, photosensitivity, and neurologic findings. The more of these that are present, the more likely the diagnosis of lupus. ANA is the abbreviation for anti-nuclear antibody. This is commonly found in lupus patients and the higher the "titer" the more likely the diagnosis. This measures the reaction after serial dilutions; that is,l/80,1/160. 1/320,1/640. 1/1280, etc. 1/640 is fairly high. Another way is to biopsy uninvolved skin to see if there are immune complexes in the skin. Your daughter certainly has some signs of this disease.

Systemic Lupus Erythematosus
Question: I am female, 50 yrs old, and have Systemic Lupus Erythematosus. Affecting lungs, heart, and joints. I am presently taking 240mg Verapramil, 800mg Tagamet, .625mg Premarin, 5/325mg Endocet, 37.5mg Adipex, and 350mg carisoprodol. I have SLE and can no longer take Motrin. Don't want to take Pred for maintenance trying to lose weight. Will be going to a pain management clinic soon. Is it safe to take all these medications at the same time? Only the Endocet and Crisoprodol are taken more than once a day. Concerned about long-term affects, since I take it all at bedtime and must work full time as a Secretary.

Answer: No obvious problem that I'm aware of. However, I wouldn't probably mix carisoprodol and Adipex. I would be very leery of Adipex with SLE. There are patients who develop vegations on their cardiac valves with SLE and potentially with Adipex. If you would continue this drug I'd keep a close eye on my heart valves.

Genetic Link
Question: Is there a genetic link with Lupus?

Answer: Not clear what the link is ;but, it does exist. Probably in the proteins on certain receptors in the body. Then the body gets sensitized after environmental exposure-to what isn't clear. So, the susceptibility is inherited and the disease only develops after further exposure in susceptible individuals. Genetic inheritance is demonstrated in identical twin studies as well as the HLA status of affected individuals. There has been a lot of specific research done on different sub-types and their propensity to develop lupus. I would refer you to a basic medical textbook of Rheumatology like Wm. Kelly's Textbook of Rheumatology-available at any medical school library or through inter-library loan.

General Information
Question: My mother in law has Lupus we are still trying to find out more about it. We live in a small town and I don't feel they are real experienced with this. Any Info would be appreciated. Also she is on a limited income and she is a widow with no insurance. Do you have any info on getting medications at little or no charge for someone in this perdicament?

Answer: Systemic Lupus Erythematosus (SLE) is an inflammatory disorder of unknown cause, that can affect any part of the body. Although the specific cause remains unknown, research continues, and there is already a great deal known about this disease. Patients with SLE produce abnormal antibodies, which are proteins found in the body that fight off any foreign invader, be it an infection with a bacterium, a virus, or anything that the body knows should not be there. In SLE patients, however, the body forms antibodies against itself, and more specifically, against different parts of its own cells. SLE can occur at any age, but tends to be diagnosed between the ages of 15 and 40, and has a large predilection for affecting women more than men. Again, the cause of SLE is not known, but genetics do appear to play a role, because if a family member has SLE, the other family member’s risk of having SLE goes up by approximately 30%. However, since all family members do not have the disease, there must be other, as yet undetermined, factors involved in causing this disease. SLE can affect any site in the body, from the brain, to the eye, heart, lungs, kidneys, intestine, urinary and reproductive tracts, skin and hair. Patients can present to their physicians with complaints related to a particular organ that is affected (such as blood in the urine, if the SLE is affecting their kidneys, for example), or with more generalized complaints such as low grade fever, lethargy or fatigue, decreased appetite, aches and pains, rash (the classic rash one sees with SLE is a “butterfly”- shaped rash across the bridge of the nose and cheeks), or weight loss. The typical course of SLE is that of a waxing and waning pattern, i.e. flare-ups alternating with periods of little to no symptoms at all. There are many triggers that can set off a flare of SLE, including infection, fatigue or exhaustion, certain medications, excessive sunlight exposure (ultraviolet light, in particular, and patients should wear high level sun blocks if sun exposure is expected), and even physical or emotional stress. Treatment of SLE basically involves treating the many organ sites of inflammation caused by the body’s own antibodies attacking its own organ systems. Decreasing the inflammation with medications in turn, deceases organ damage and improves patient symptoms. The medications used frequently are those that dampen or diminish the body’s entire immune response in general, thereby decreasing that part of the immune system that is acting abnormally. Thus one can see how with too much medication the body’s normal defenses are excessively weakened, while too little medication and the SLE is not adequately treated. Corticosteroids (you may know this medication by some of its names, such as hydrocortisone or prednisone), azathioprine, and cyclophosphamide are among the agents commonly used for this disorder. However, other non-medicine secondary therapies are equally important. Patients with SLE require more sleep than the average individual. They should minimize sun exposure or be sure to use UV blocks with frequent re-applications. Other medications must be carefully monitored so as to not include any that could set off a flare-up. Stresses such as emotional, surgery, childbirth, can all make SLE worse and therefore require increased therapy. SLE is a serious disorder that can lead to lifelong organ damage if left unchecked. Thereare unfortunate patients who go on to experience many organ complications despite aggressive treatment, as well. However, with treatment, many people can lead normal lives for many years, without organ injury. This is a disorder that can be managed by a specialist, known as a rheumatologist, if possible. In addition, a great deal more information about this disease is available, and your physician can provide you with resources to pursue. There are many support groups for patients and families coping with this disease, as well. With respect to what can be a rather expensive treatment regimen, your mother in law may be a candidate for government subsidized prescriptions. Speak to your physician- he or she may be able to refer you to a specialist for at least a few visits, and can certainly discuss treatment options with you. Many general physicians can manage this disorder as well, and referral may not be necessary in your case. A discussion with your physician regarding subsidized prescriptions may also prove to be beneficial, as treatment of SLE is a life-long endeavor.

Drug Treatments
Question: I have very recently been diagnosed with lupus. My primary symptoms are low grade fever, fatigue,arthritis and pleurisy. So, far aspirin or ibuprofen is all I am taking. I am worried about how much aspirin I can safely take? Are either of the over the counter NSAID’s or aspirin considered safer to take long term? Also will it help to take Tagamet along side to safe guard the stomach?

Answer: : Systemic Lupus Erythematosus (SLE) is an inflammatory disorder of unknown cause, that can affect any part of the body. Although the specific cause remains unknown, research continues, and there is already a great deal known about this disease. Patients with SLE produce abnormal antibodies, which are proteins found in the body that fight off any foreign invader, be it an infection with a bacterium, a virus, or anything that the body knows should not be there. In SLE patients, however, the body forms antibodies against itself, and more specifically, against different parts of its own cells. SLE can occur at any age, but tends to be diagnosed between the ages of 15 and 40, and has a large predilection for affecting women more than men. Again, the cause of SLE is not known, but genetics do appear to play a role, because if a family member has SLE, the other family member’s risk of having SLE goes up by approximately 30%. However, since all family members do not have the disease, there must be other, as yet undetermined, factors involved in causing this disease. SLE can affect any site in the body, from the brain, to the eye, heart, lungs, kidneys, intestine, urinary and reproductive tracts, skin and hair. Patients can present to their physicians with complaints related to a particular organ that is affected (such as blood in the urine, if the SLE is affecting their kidneys, for example), or with more generalized complaints such as low grade fever, lethargy or fatigue, decreased appetite, aches and pains, rash (the classic rash one sees with SLE is a “butterfly”- shaped rash across the bridge of the nose and cheeks), or weight loss. The typical course of SLE is that of a waxing and waning pattern, i.e. flare-ups alternating with periods of little to no symptoms at all. There are many triggers that can set off a flare of SLE, including infection, fatigue or exhaustion, certain medications, excessive sunlight exposure (ultraviolet light, in particular, and patients should wear high level sun blocks if sun exposure is expected), and even physical or emotional stress. Treatment of SLE basically involves treating the many organ sites of inflammation caused by the body’s own antibodies attacking its own organ systems. Decreasing the inflammation with medications in turn, deceases organ damage and improves patient symptoms. The medications used frequently are those that dampen or diminish the body’s entire immune response in general, thereby decreasing that part of the immune system that is acting abnormally. Thus one can see how with too much medication the body’s normal defenses are excessively weakened, while too little medication and the SLE is not adequately treated. Aspirin, and other salicylates, corticosteroids (you may know this medication by some of its names, such as hydrocortisone or prednisone), azathioprine, and cyclophosphamide are among the agents commonly used for this disorder. However, other non-medicine secondary therapies are equally important. Patients with SLE require more sleep than the average individual. They should minimize sun exposure or be sure to use UV blocks with frequent re-applications. Other medications must be carefully monitored so as to not include any that could set off a flare-up. Stresses such as emotional, surgery, childbirth, can all make SLE worse and therefore require increased therapy. With respect to which NSAID is best for you, consult with your health care provider. The dose and duration of these medications will be affected by the other medications you are taking, as well as the course and severity of your symptoms. A regimen that includes an agent to protect the stomach from the effects of the NSAIDs is a good idea, and you should present this to your health care provider, and discuss the pros and cons of including it in your therapy. SLE is a serious disorder that can lead to lifelong organ damage if left unchecked. There are unfortunate patients who go on to experience many organ complications despite aggressive treatment, as well. However, with treatment, many people can lead normal lives for many years, without organ injury. This is a disorder that can be managed by a specialist, known as a rheumatologist, if possible. In addition, a great deal more information about this disease is available, and your physician can provide you with resources to pursue. There are many support groups for patients and families coping with this disease, as well. With respect to what can be a rather expensive treatment regimen, your mother in law may be a candidate for government subsidized prescriptions. Speak to your physician- he or she may be able to refer you to a specialist for at least a few visits, and can certainly discuss treatment options with you. Many general physicians can manage this disorder as well, and referral may not be necessary in your case. A discussion with your physician regarding subsidized prescriptions may also prove to be beneficial, as treatment of SLE is a life-long endeavor.

Toprol XL
Question: I was taking Toprol XL for a long time. I was getting very sick all the time. I told my doctor but he said he didn’t know why. My feet and hands get cold and my legs get big and blue and my feet too. I was told by my many doctors I have lupus. I am going to go see a lupus doctor soon. My neurologist took tests on me(diagnosis). (Connective tissue disease) I have nerve damage all over my body now. I’m in a wheelchair now. I have two drop feet now I would go to the hospital alot because of my feet and legs. After alot of hospital visits he took me off of them. But I didn’t get better I got worse. Could this have messed up lupus? Please let me know so I can tell my lupus doctor when I see her. This hit me so fast I didn’t know what was happening here.

Answer: : Beta blockers can exacerbate Raynaud's Phenonomen which is seen in lupus and what you are probably reporting as blue feet. However, it is not a drug that is known to cause lupus. There are drugs that do this ;but,this is not one and the symptoms of Raynaud's will not be present if the drug is stopped. So, if you didn't improve the drug is not the culprit.



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