"Being Newly Diagnosed with Lupus" Chat Transcript for Dr. Don Thomas
May 14, 2008Moderator
Good afternoon. The Lupus Foundation of America is pleased to welcome Dr. Don Thomas.
Dr. Thomas has been a rheumatologist with Arthritis and Pain Associates of Prince George’s County, MD, since June 1998. He is certified by the American Board of Internal Medicine in both rheumatology and internal medicine, and is a Fellow of the American College of Physicians (FACP) and an active Fellow Member of the American College of Rheumatology (FACR). He is an Assistant Professor of Medicine at the Uniformed Services University of the Health Sciences, and he actively teaches courses in rheumatology at Walter Reed Army Medical Center. Dr. Thomas also actively serves as a member of the Medical and Scientific Advisory Board of the Lupus Foundation of America, Greater Washington Chapter.
Dr. Thomas graduated as a Distinguished Military Graduate from George Military College in 1981 with an A.S. and then from the University of Houston in 1985 with his B.S. in Biology. In 1989, he received his M.D. from Baylor College of Medicine in Houston, TX. He completed his residency training in internal medicine at Brooke Army Medical Center in 1993 and his fellowship in rheumatology at Walter Reed Army Medical Center in 1995, after which he stayed on as a member of the teaching staff until he joined Arthritis and Pain Associates. He is an active member of the D.C. Rheumatism Society, the American College of Physicians, the American College of Rheumatology, and the American Medical Association.
Dr. Thomas's awards include the AMA's Physician Recognition Award from 2000 - 2006, and the AMA’s Physician Recognition Award with Commendation from 2007 to the present. He is rated as one of America’s Top Physicians by the Consumers’ Research Council of America from 2004 - 2007 in the specialty of rheumatology.
We welcome Dr. Thomas, and thank him for joining us this afternoon.
Without further delay, let's begin.
Moderator
Being newly diagnosed, what symptoms do I need to be concerned about? I'm in my 50s and some aches and pains are to be expected, right? Also I was told to stay out of the sun but for me personally, I feel less achy and more active when I'm in the sun, if it's not too humid out. Are there any exceptions to this no sun rule? -- Oakley, IL
Dr. Thomas
Oakley: Everyone with lupus has different symptoms when their disease is active; however some of the most common symptoms include fatigue, joint pains, muscle pains, joint swelling, various types of rashes, sores in the mouth, chest pain which gets worse when taking in a deep breath, and fingers turning white and/or blue with cold exposure. You are correct that being in your 50s, you may also have achiness due to osteoarthritis, bursitis, or tendonitis simply from aging. Asking your doctor about your aches and pains while he or she is examining you is the best way to figure out if your aches are in deed due to lupus or something else.
Over time, most patients with lupus learn what their symptoms of lupus are. As far as sun exposure, lupus is made more active by exposure to ultraviolet light. The sun is the major source of ultraviolet light but it also comes from indoor lights as well. Lupus experts recommend that all patients wear sunscreen every day, even if they don’t go outside and even if it is winter and even if it is storming outside (ultraviolet light still comes through the clouds). On sunny days, it is best to reapply it 2-3 times a day. Other measures such as wearing a wide brimmed hat, or wearing special ultraviolet reflective clothes can also be helpful. You should also avoid as much as possible being outside too much on sunny days between 10 a.m. and 2 p.m. Also, it is best not to be around water on sunny days except in the mornings or late afternoon/evening. Although you may feel better when you are out in the sun, you are really taking a risk of causing your lupus to flare up from this activity.
With some patients, they will get a rash from ultraviolet light exposure, but many patients do not. The light exposure can also cause lupus to cause inflammation of the internal organs such as causing kidney disease, pleurisy, and other problems. Unfortunately, folks who really love the sun find this to be a difficult life style change once they are diagnosed with lupus. But, it is as important for the lupus patient to avoid the ultraviolet light exposure as it is for someone with heart disease to stop smoking (for example).
Toosie
Can you have systemic lupus if your lab results say you have a positive (1:1280) and significant ANA titer with a "centromere pattern - highly suggestive of Progressive Systemic Sclerosis, CREST Syndrome?" That is, can you have SLE rather than scleroderma with these results?
Dr. Thomas
Although anti-centromere pattern ANA may often suggest the possibility of a disease related to lupus called CREST syndrome (a form of scleroderma), it is not 100% specific. Some patients with lupus, rheumatoid arthritis and related diseases may have a centromere pattern ANA. I've even seen it in normal people before. Your rheumatologist is the best person to figure out the significance of this lab test abnormality.
Moderator
Should lupus patients, who have had chicken pox but not shingles, get the shingles vaccine? -- Flagstaff, AZ
Dr. Thomas
Flagstaff: The shingles vaccine (zoster vaccination) should be considered by people 60 years of age or older. This is the age when shingles is potentially most problematic. It doesn’t matter if you know you have had chicken pox or not in the past (as you allude to, you get shingles from the chicken pox virus which infects the body many years before it actually causes shingles.). Everyone 60 years old or older should consider getting it. However, if your immune system is suppressed by treatment for your lupus (such as taking high doses of prednisone, or taking methotrexate, Imuran, Arava, CellCept, Cytoxan, or biologics such as Rituximab) you should not get the vaccine as it contains a live virus. Make sure to ask your doctor first to make sure it is safe to get it. Also, those who are allergic to either neomycin or gelatin shouldn’t get it either.
Moderator
With a positive lupus anticoagulant test, is that just a part of the lupus test? How important is this test in diagnosing lupus? -- MO
Dr. Thomas
MO: Most rheumatologists consider the lupus anticoagulant (LAC) test as one of our criteria to help in diagnosing lupus (4 out of 11 possible criteria are usually needed); so yes, it can be helpful in making a diagnosis of systemic lupus erythematosus. In addition, some patients positive for LAC are at increased risk of getting blood clots to the legs (DVT), lungs (PE), or brain (stroke); so some physicians recommend taking aspirin once a day in the hopes of preventing these problems in patients who are positive for LAC. This is controversial as to whether taking aspirin daily decreases the risk of getting blood clots, but I am one of those who do recommend it unless future studies prove otherwise. In addition, lupus patients who are positive for LAC should avoid certain things which put them at increased risk for blood clots.
They should not smoke cigarettes; they should not take birth control pills; they should maintain a proper weight; they should keep their blood pressure under control, etc. One other thing is that many people who are positive for LAC do not have lupus. It can be seen in normal people (especially as we age), during certain infections, from medications, with other disorders such as rheumatoid arthritis, or due to a condition called primary antiphospholipid antibody syndrome.
Moderator
How does a constantly high sed rate lab results affect my body? My test results have been 79, 90, 100 and 67. I only take prednisone and Methotrexate for my lupus (SLE) and my rheumatoid arthritis. -- Las Vegas, NV
Dr. Thomas
Las Vegas: Firstly, an elevated ESR, so to speak, doesn’t affect the body at all. However, it reflects what may be going on in the body. Although we often use it to follow treatment in some patients with inflammatory conditions (such as lupus), it is very nonspecific and can be caused by other things. For example, it can be elevated due to being overweight, having low albumin levels, having protein in the urine, or being anemic.
Lupus patients don’t generally have such high, constant ESRs as you are describing, except during periods of intense inflammation (such as during attacks of pleurisy or similar very inflammatory conditions), so it makes me wonder if you may have another reason for having such a high ESR. Another possibility to consider is if you also have Sjogren’s syndrome with your lupus. Some Sjogren's patients have high immunoglobulin levels which can make the ESR elevated. Ask your rheumatologist what his or her thoughts are regarding these possibilities.
justmetrouble
I have been given Plaquenil to maintain my lupus. Is this a good choice? I notice you don’t mention it in the previous list of drugs.
Dr. Thomas
Most rheumatologists consider Plaquenil to be the first drug of choice for almost all lupus patients. It decreases the chances of developing more severe forms of internal organ damage, increases life span, decreases cholesterol, and can decrease the chances of getting blood clots. It is one of the safest medicines we have for lupus.
Moderator
Is it possible to have lupus and have a negative ANA test result? -- Flint, MI
Dr. Thomas
Flint: In the past, this was certainly a possibility due to the ANA test not being as sensitive for lupus as it is now. However, more recently (the past 15-20 years), the newer way of performing the ANA test made it close to impossible to have a negative ANA test and have true systemic lupus erythematosus (however, nothing in medicine is 100%, so I won’t go that far). I do not recall seeing any significant cases presented in the medical literature of patients having SLE with a negative ANA test with the new technique. However, now, some labs are using a newer, cheaper ANA test.
In fact, the American College of Rheumatology just sent out a questionnaire to its members asking whether they are having troubles with accuracy from this new test after it received some complaints as to the testing technique not giving correct results. One can ask their rheumatologist if the newer cheap testing technique was used, or if the more accurate technique was used when the test was performed. One other possibility is that some patients with lupus will have their ANA test become negative during treatment. I’ve seen this happen a few times.
Kerry
Nutrition -- I've read about and talked to several people with autoimmune disorders whose symptoms improved, sometimes dramatically, when they switched to a gluten-free diet. Several of these people said that their doctors (rheumatologists/primary care doctors) didn't think that the gluten-free diet played much of a role in the patients care. What are your feelings on this? I am considering trying to go gluten-free. It would be a very difficult thing to do, but worth it, I believe, if it improved my health.
Dr. Thomas
Kerry: There is no good medical evidence that a gluten free diet helps significantly for autoimmune diseases such as lupus. However, there is a possible link between celiac disease (gluten sensitive enteropathy) and lupus ... in other words some patients with lupus can also have this disease ... and their celiac disease definitely improves with gluten free diet. Of note, there is absolutely no diet proven to change the course or to help lupus. However, eating extra fish regularly may help due to antioxidant properties of fish oil. Stay away from bean sprouts as a mold that grows on them can flare up lupus.
michay
What happens when your lupus affects your eyes and you have to take the eye drops called Restasis?
Dr. Thomas
Michay: Lupus can cause inflammation virtually in every part of the body. If it causes inflammation of the tear glands that make tears (or the salivary glands and causes dry mouth), it is called Sjogren’s syndrome. Restasis is an anti-inflammatory medicine that decreases inflammation so that the tear glands start to make tears appropriately again.
Moderator
I was finally diagnosed 3 month ago. (It has been a long journey to finally have a diagnosis) My family has not quite grasped the physical and emotional roller coaster I am on. My symptoms have been extremely debilitating, and then add in the financial issues. How do I help my family understand that even doing the everyday household chores are overwhelming, not to mention trying to hold down a full time job is not something I could manage right now (physically or emotionally)? What do I do? -- Mesa, AZ
Dr. Thomas
Mesa: This is a very difficult and complex question to find a simple answer to. This type of problem is not uncommon in patients who have to deal with any chronic disease, not just lupus. It is especially common in conditions where the person appears perfectly normal on the outside to their friends and relatives, which does apply to most lupus patients. The psychological factors, stresses, and family dynamics are very different in every family, so there is not one correct answer. Some things to consider would be to join a support group (contact your local LFA chapter) and find out what others in your situation have done, and what seems to work or not work. Another possibility would be to see a counselor (sociologist, psychologist, pastor, social worker, etc.) to discuss the specifics of your problems and help you formulate an approach in working with your family. Good luck with this very difficult situation.
Annet
I got diagnosed with SLE in March 2008. I have struggled through lots of information what SLE is and can cause inside your body. But how do I cope emotionally with having SLE?
Dr. Thomas
An excellent question. It can be very difficult for anyone who newly develops a chronic disease. You are faced with having to deal with something for the rest of their life, take medicines, see a doctor regularly, and change your life style habits. I would recommend joining a support group with the Lupus Foundation of America (contact your local LFA chapter). Consider joining message boards at www.lupus.org/messageboards. Also, consider seeing a counselor (psychologist, sociologist), pastor, family, friends, etc.
Mendy
I am 28 and have been diagnosed with lupus. My doctor has talked to us a lot about lupus and pregnancy. If I am able to get off certain medications I would be able to try and get pregnant. However, he talked with us about the risks to my health due to my lung involvement. He said that if I am healthy during pregnancy, then the baby will be healthy. What are the risks to the baby? What are the chances that I will not be able to get pregnant? Why are people with lupus unable to get pregnant and have an increased chance of miscarriages?
Dr. Thomas
With lupus, it is recommended that your lupus be under excellent control for 6 months before getting pregnant. Studies suggest that then, lupus patients over all have the same chances of having a normal baby outcome compared to the normal population. If your lung disease is active, then that is much more difficult as lupus can flare up about 1/3 of the time if a patient has active lupus ... your rheumatologist knows your case best to give you exact numbers on how you may do. Lupus patients in general do not have increased infertility problems (i.e. they get pregnant just as easily over all). Patients with lupus have bad outcomes mainly if their lupus disease is active during or before pregnancy with miscarriages, uncontrolled high blood pressure, kidney disease, and pre-eclampsia.
Also, 30% of lupus patients can have antiphospholipid antibodies which increase the risk of miscarriage due them causing blood clots in the placenta and they need blood thinners during their pregnancy.
Moderator
Please, would you define "remission" -- is it a lessening, or a complete absence of symptoms? During a remission, do you ever advise reducing medications? -- Rexburg, ID
Dr. Thomas
Rexburg: There is no formal, approved definition for lupus remission (to my knowledge); however, we certainly use it to describe certain situations. One situation is a patient who presents with a disorder which appears to be systemic lupus and then after a while all symptoms, physical exam findings, and blood abnormalities convert back to normal and stay that way even after all medications are stopped. Many would argue that the patient probably did not truly have lupus, but probably had something else causing lupus-like problems (such as can be seen with certain infections such as parvovirus infection.) The more common usage would be to be “in remission on medications.” To me this means that a patient with lupus is on Plaquenil +/or other medications and is doing well with no evidence of lupus manifestations such as arthritis, rash, kidney involvement, blood cell count problems, etc.
This is our goal in most lupus patients, but not always possible. When in remission on medications, I always try to taper steroids down to the lowest possible dose and hopefully stop them. I never take my patients off of Plaquenil (hydroxychloroquine) as this should most likely be taken for the rest of one’s life in patients with true SLE. Nonsteroidal anti-inflammatory medicines such as Motrin, Celebrex, naproxen, etc. can be stopped if there are no joint or chest pains. Immunosuppressant medicines (such as methotrexate or Imuran) can sometimes be decreased in dose, but this all depends upon the exact history of the patient’s disease in the past.
dinny
Is pulmonary hypertension a secondary symptom to SLE? If so how is it treated?
Dr. Thomas
Yes it is. Pulmonary hypertension is due to lupus affecting the arteries of the lungs causing the blood pressure in those arteries to rise which causes a lot of increased pressure on the heart causing shortness of breath and potentially blood clots in the lungs and heart disease and early death. Fortunately it is treatable these past few years with medicines which relax the pulmonary arteries and vastly improve the breathing in these patients (medicines such as Iloprost).
ressie
Is 600 mg per day of Plaquenil a lot?
Dr. Thomas
I actually use 600 mg a day of Plaquenil in my patients during the first month then drop it to 400 mg a day as it works a lot quicker. Plaquenil use and the potential for side effects are based on body weight. So someone who weighs a lot may need 600 mg a day. However, in someone who is of normal weight, I would not recommend that much for very long.
LaVox
Plaquenil can have different side effects with people who have lupus. My daughter will be starting Plaquenil soon and we are afraid that it will affect her eye sight and hearing.
Dr. Thomas
I love these questions on Plaquenil. Nothing seems to scare patients as much as reading the side effects of Plaquenil, but the biggest mistake patients make is not taking their Plaquenil. It is MUCH safer than any other medicine we have. There have been very few reported cases in the medical literature of Plaquenil causing eye problems (retinopathy) out of many millions of prescriptions given. The cases reported were in patients on too high of doses or didn't receive proper monitoring by an eye doctor.
The vast majority of rheumatologists and eye doctors have never seen a major eye problem from Plaquenil. As long as your daughter gets an eye exam once a year and is on a dose based on her body weight, she will most likely not have any problem. Hearing problems are even much rarer and I would not worry much about it. Also, a lot of these side effects listed for Plaquenil in the PDR and medical books were actually seen in a related much stronger medicine called Chloroquine rather than with Plaquenil. If I had lupus, I would in no way be afraid to take Plaquenil.
Moderator
My granddaughter has lupus and her face gets red from sun exposure. What can we do to protect her face and try to soothe the redness? It looks like a sunburn. -- Elizabeth, NJ
Dr. Thomas
Elizabeth, NJ: Protecting your granddaughter from the sun is one of the most important parts of her treatment. She should wear a high SPF sunscreen every single day even if not going outside, even in winter, even if it is storming outside (as you need to protect her from ultraviolet light which also comes from indoor lights). It should be worn on all exposed body areas. On sunny days she should reapply it 2-3 times a day. She should wear a wide brimmed hat if it is sunny. Consider getting UV protection tinting for the car. Special clothes with UV protection are available. You can also wash her clothes with RIT Sunguard (available from Amazon.com) which increases the SPF of clothing; it lasts after quite a few washings.
She should limit time spent outside between the hours of 10 a.m. and 2 p.m. Being around bodies of water, pools should be avoided except in the mornings, late afternoons, and evening hours. Of note, some patients with lupus always have redness or flushing of their cheeks even after doing everything correctly. As far as soothing the redness, cortisone creams are usually the most helpful treatment if really bothersome. However, treatment is not always needed even if the cheeks are red. It is best to discuss this with the rheumatologist or dermatologist.
guest
I was diagnosed SLE in November 2007 and have been taking prednisone, Imuran and Plaquenil and I wear sunblock lotion whenever I go out. Sometimes the skin on my face gets itchy. Could you please tell me if it is due to the sun exposure or it is side effects of the medication I take? Another question is about my eyes. I have dry eye syndrome for many years; is it caused by lupus? Do I need to take the eye drops Restasis that were mentioned earlier in the discussion? Many thanks!
Dr. Thomas
Drug itchiness usually affects the entire body rather than just the face. It is most likely due either to your lupus (light exposure) or even possibly due to a reaction to your sunblock. Seeing a dermatologist would be the best way to help figure this out. Also, please remember, you should be wearing sunscreen religiously daily even if you don’t go outside.
As far as the dry eyes, I can't say whether the dry eyes are due to Sjogren's syndrome related to your lupus or due to medications or something else. It is a great question to ask your rheumatologist. If due to your lupus, Restasis can be very helpful. Also, don’t smoke, use a humidifier in your house, and use artificial tears every 2-3 hours to keep them moist.
Moderator
Does lupus affect the neurological system and can it cause seizures? -- Kansas City, MO
Dr. Thomas
Kansas City: Absolutely, in fact having seizures is one of the 11 criteria for classifying whether a patient has lupus or not (in other words it can help to make the diagnosis). Lupus can affect any section of the neurological system causing diverse problems such as difficulty with memory, seizures, strokes, multiple sclerosis like problems, nerve damage of the feet and hands, nerve damage in the spinal cord, Bell’s palsy, etc.
dogmom
Is there any reason for me to call/notify my dr. when I have a flare?
Dr. Thomas
dogmom: Canned answer is... "it all depends." Patients who have had lupus for a while and can tell if it is a mild flare and know what to do for it (such as increasing their prednisone) may be able to take care of it themselves. However, this should ONLY be done in concert with approval from their rheumatologist. Otherwise, I think it is very important that patients call and see their rheumatologist for flares as it is very important to make sure the lupus is not affecting the kidneys, blood counts or other major internal organs.
Moderator
Is there muscle pain associated with lupus? -- Austin, TX
Dr. Thomas
Austin: Yes, in fact muscle pain is one of the more common problems that lupus can cause. It can also sometimes cause actual inflammation of the muscles (a condition called myositis) which can cause muscle weakness. In addition, up to 20% of patients with systemic lupus can develop a condition called fibromyalgia. This is a condition which causes diffuse muscle and joint pain as well as fatigue and difficulty thinking. Its treatment is different that how we treat lupus itself.
Annet
3 weeks after being diagnosed with SLE, I got thrombosis in my leg. As I understand that could be from the active SLE. It depends on certain blood tests -- taking within 3 and 6 months -- if thrombosis will be a permanent risk i.e. (next to Plaquenil) another life-long medicine to take. Do you have any percentages on that?
Dr. Thomas
Annet: 30% of patients with lupus are positive for antiphospholipid antibodies (anticardiolipin, lupus anticoagulant, and beta 2 glycoprotein I). 50% of these patients can get blood clots (especially to the lungs, legs or brain). If this happens, life long medicines to thin out the blood (like Coumadin) are needed. Good luck, I hope you do well!
Moderator
How do I know when I am in a flare up? Everyone tells me "oh you will know" but after my diagnosis my first flare up I was walking around with pleurisy and pericarditis for weeks before I sought medical help. -- Ontario, Canada
Dr. Thomas
Ontario: It is true that with time most lupus patients tend to figure out what their lupus flares are like as it is common for the same types of problems to occur with flareups. For example in your case, if you were to develop chest discomfort that is worse with breathing in or laying down, that would be a good signal that your pleurisy/pericarditis is flaring up again. Also, over time, patients may develop new problems. It is helpful to know what some common symptoms of potential flare ups are. These include, but are not limited to, joint pains, fatigue, fever, pleurisy chest pain, mouth ulcers, butterfly rash on the face, etc. Most importantly, it is important to call and see your rheumatologist ASAP as he or her can help you figure out whether it is a flare or not.
sue
I've been told I have small amounts of protein in my urine on 24 hours urine tests (<500 mg but considered abnormal by lab standards). Can this be caused by lupus or does the protein amount have to be much higher?
Dr. Thomas
Protein in the urine is always worrisome. 40-50% of lupus patients can get kidney involvement and it usually first shows up as protein in the urine. Sometimes this requires very strong medicines such as CellCept to treat. However, other causes need to also be ruled out such as high blood pressure or due to medicines such as Motrin. Many times a biopsy of the kidney is needed to figure it out. Most labs consider >250 mg to be too much. If your rheumatologist is not sure, a kidney specialist would be helpful to see as well.
Moderator
My 14 year old daughter has been diagnosed with undifferentiated connective tissue disease, ITP and arthritis after a 7 month evaluation. My question is, why is she still having bone and joint pain while taking these medicines? Is she the only child that this is happening to? She currently is taking Prednisone and Plaquenil and doctors are discussing possible Methotrexate or CellCept depending on her platelet function. She has had a bone marrow and it was negative, thank god. I am confused and seeking a second opinion. -- Charlotte, NC
Dr. Thomas
Charlotte: We use the term undifferentiated connective tissue disease (UCTD) in those patients who have features of a connective tissue disease but do not satisfy certain criteria for making a precise diagnosis. Examples of connective tissue diseases include lupus, rheumatoid arthritis, dermatomyositis, vasculitis, Sjogren's syndrome, and a few others. These disorders don’t always let us know exactly which one it is at first, sometimes these disorders can take months to years before we know which one it is. Sometimes a patient will never evolve beyond the UCTD diagnosis. However, this doesn’t keep us from treating the patient appropriately, because the arthritis and other problems of these diseases are treated similarly; so you don’t have to have an exact name for the diagnosis in order to treat it appropriately. Another problem with all of these disorders is that there is no one correct way to treat these diseases.
In addition, most medications for UCTD and lupus are slow to work (for example, Plaquenil can take up to a year to get the full effect), so a patient has to be on a particular regimen for a long time before you can call it a failure. Because of these pitfalls in diagnosis and treatment, I can certainly understand how frustrating it has to be being the patient and especially being the parent of a child with one of these disorders. If it is any consolation, we doctors also feel real badly for our patient’s suffering and are frustrated when we don’t see our patients getting better with what we try. Hopefully there will be better diagnostic tests, as well as better therapies in the future to treat these diseases more satisfactorily. I think the best avenue of approach is to make sure that you have the very best rheumatologist who has experience in treating connective tissue disorders in your area and seeing them regularly, and sticking with them as they are the only one who know all the little nuances of your child’s condition and what differences were seen with different medicine changes. Of course it never hurts to get a second opinion as well. A good way to go about this is to get a complete copy of the chart, all lab and x-ray results, seeing another rheumatologist and ask them what they think about the diagnosis that has been made and what they think of the medicines that have been tried so far. If that doctor concurs that everything is within the standard of care, then it is probably best to stay with your first rheumatologist who knows you daughter the best (as long as you trust and like that first doctor.)
Moderator
Why are so many women getting SLE lupus at late onset of age … 50 years and older? I thought it was suppose to be a disease for women in their child bearing years. -- Searsport, ME
Dr. Thomas
Searsport: Lupus affects people of all ages and both sexes. There are children with the disease less than 10 years old, and there are patients who first get it in their 80s. However, when you look at the number of people who get it at these different ages, it does more commonly occur in women of childbearing years as you allude. This is most likely due to the importance of female sex hormones on causing the disease. However, female sex hormones are not the only thing which drives this disease. Other factors such as genetics, medications, infections, and probably many yet unknown influences also impact the disease. So men and women of all ages can have lupus. I do not know of any data to suggest, though, that it is becoming more prevalent in postmenopausal women compared to the past. In addition, we have to remember that our ability to diagnose lupus at earlier and milder stages is certainly a factor now more so than it was in the past.
Moderator
Can discoid lupus turn into systemic lupus? -- Blue Island, IL
Dr. Thomas
Blue Island: Yes, patients who have discoid lupus can develop systemic lupus. Fortunately, the vast majority do not. Only 1 out of every 10-20 discoid lupus patients will develop systemic lupus over time.
Kathy
My lupus first manifested itself with thrombocytopenia in which my platelets dropped to 1,000. Does this mean that I don't have to worry about blood clots?
Dr. Thomas
No, not at all. Some patients who are positive for antiphospholipid antibodies will develop low platelet counts due to those antibodies and these can cause blood clots. Ask your rheumatologist, they can let you know what your situation is.
Moderator
What are the risks and benefits of taking Plaquenil (Hydroxychloroquine) long term? -- Hickory, NC
Dr. Thomas
Hickory: Fortunately, Plaquenil is by far one of the safest prescription medications (if not THE safest) to treat lupus. It is really rare to ever have a significant side effect on Plaquenil. Although we recommend that our patients see an ophthalmologist once a year to make sure they don’t develop any problems in the back of the eye from the Plaquenil (called retinopathy), in reality this is truly a very rare problem as long as the patient is on the correct dosage based upon their body weight. Probably the most common long term side effect, is that sometimes Plaquenil can cause a darker discoloration of the skin in blotches, especially on the legs and neck, over time. Other potential side effects that one reads about are truly rare. Plaquenil is especially good for treating patients with joint pains, rash, fever, fatigue, anemia, and pleurisy. Large studies show that it decreases the chances of developing severe internal organ involvement, and increases the lifespan of lupus patients.
In addition, it may also help to decrease cholesterol and helps to prevent blood clots. The benefit from taking Plaquenil far outweighs any potential risk compared to what untreated lupus can do to the body.
Moderator
Why are doctors so reluctant to diagnose lupus when a person has more than eight symptoms and a negative ANA test? It has been my experience that they say "it's tissue-related" but will not say lupus. It is very frustrating not to have a definite diagnosis although all the signs are there and have been prescribed Arava, Methotrexate and Chloroquine. -- Kissimmee, FL
Dr. Thomas
Kissimmee: I am also guilty as charged for this. The problem is that the list of symptoms of lupus is very nonspecific and can be seen in so many other diseases. It is not that uncommon for a patient to come into my office with a list of symptoms or a checklist from the internet for systemic lupus, multiple sclerosis, Lyme’s disease, fibromyalgia, depression or other disorders thinking that that is what they have. The problem is that many medical illnesses, such as these, share many similar symptoms such as fatigue, joint and muscle pain, chest pain, weakness, tingling sensations, fingers turning blue or white with cold exposure, swelling, etc. The important thing, is that when a patient has these symptoms, they should see a doctor for a proper evaluation to hopefully figure out exactly what the cause is.
In regards to the specific criteria for classifying lupus (i.e. needing 4 out of 11 criteria to be diagnosed with lupus) these are also not specific for lupus. For example, a patient with rheumatoid arthritis may have arthritis, a low white blood cell count, a positive ANA, and pleurisy (4 of the criteria) yet actually have rheumatoid arthritis and not systemic lupus. In addition, ANA negative lupus is incredibly rare these days, and some would argue just doesn’t happen any more. The information that you read about systemic lupus patients being ANA negative refer back to when the ANA test was not as good of a test as it is now.
Moderator
With there being new drugs that target B or T cells I wonder how you can determine which patients have affected B or T cells. Is there a way to test whether B or T cells are being affected? -- Savannah, GA
Dr. Thomas
Savannah: This is a fantastic question that we rheumatologists would like to know as well. In reality, lupus patients do not just have a problem with the B-cells, or T-cells alone. Patients actually have abnormalities occurring with both and in numerous other parts of the immune system as well. So the question comes up, which part of the immune system should we calm down with medications to be most effective in any particular patient? Would a particular patient respond better to Arava (which preferentially acts on T-cells), or to Rituximab (which acts on B-cells)? At this point, we just don’t know. However, it is a question which we hope will be answered in the future. It would be nice to have some sort of test that could be performed on a patient to help guide us better in deciding which may be the best medicine to use in a particular patient. With all the intense research that is currently being done, I think it will be possible in the future; it isn’t possible to do so right now.
Moderator
I was just reading about lupus online and I’ve noticed that it was talking about depression. I’ve noticed some of those symptoms in me. How do I cope with it without medication? -- El Paso, TX
Dr. Thomas
El Paso: As you have probably read, lupus patients do get depression more commonly than the normal population. We are not sure if it because lupus, the disease itself, causes these chemical imbalances to occur which cause depression; or whether the depression occurs due to dealing with a chronic disease (as depression is more common in people with chronic diseases.) Although many patients with depression do need medications to reverse these chemical imbalances, there are some things which may be helpful without medicines. Firstly, aerobic exercise has been shown in several studies to help with depression. In fact, a couple of studies showed it to be as effective as taking Prozac when done vigorously on a regular basis. Also, seeing a counselor who is experienced with depression (usually a psychologist, psychiatrist, and sociologist) and working through issues together to decrease stress can sometimes be helpful as well. Getting adequate sunlight exposure can also help. Of course, we teach our patients to avoid the sun. But getting up early in the morning when the sun first rises and exercise could be helpful.
Toosie
Is it common to have esophageal dysmotility and moderate GERD with lupus or is this more common with scleroderma?
Dr. Thomas
Toosie: Just as in scleroderma (which is an autoimmune disease related to lupus), lupus can also affect the esophagus causing the muscles to not work as well, making it difficult to swallow food. This can cause chest pain, heart burn, nausea, vomiting, and difficulty eating. However, it is not a common complication. I only have a couple of lupus patients in my practice who have this problem.
Moderator
That is all the time we have for today’s chat. Thank you to Dr. Don Thomas for joining us.
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