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Living with lupus

In recognition of the 2003 National Lupus Awareness Month, WebMD Live welcomed rheumatologist Dr. Harris H. McIlwain to answer questions about living with this mysterious and sometimes debilitating disease.
/ Source: WebMD

In recognition of the 2003 National Lupus Awareness Month, WebMD Live welcomed rheumatologist Dr. Harris H. McIlwain to answer questions about living with this mysterious and sometimes debilitating disease.

Member question: A lot of ladies are concerned about pregnancy and passing this on to their children. What are the odds?

McIlwain: Pregnancy is one issue in systemic lupus, as you know, and that involves the safety of the baby through the pregnancy. Your physician will take care of the pregnancy itself, including monitoring it for safety.

As far as passing lupus to the next generation, about 20% of family members of lupus patients are found to have positive ANA tests, although most of those don’t develop lupus. So there is some higher chance of having lupus if one of your parents has lupus, but there are probably other factors involved, and we can’t say that it carries a high risk. It’s not like blonde hair or blue eyes, but a more higher chance overall than if there was no family history of lupus.

Usually having lupus itself does not make us recommend that a patient not have children because of the risk of passing it on.

Member question: Is any new research being done to try to find a cure for lupus?

McIlwain: Yes. There is a great deal of research going on now, both looking at the causes of what may trigger it off, the genetic factors we just talked about, as well as treatments. Treatment would include treatment of the specific problem, such as kidney disease, or other specific problems caused by lupus.

Also there are some medications being tested that may help the symptoms of lupus and may help us lower the amount of other medications needed to control lupus.

Member question: My sister has systemic lupus. Due to meds she has extreme weight gain. What can be done for her?

McIlwain: The weight gain can come from many causes, including medicines commonly used to treat lupus, such as prednisone, or from the decreased activity, which is common, or other causes. And of course, it would be important that her physician help her find any other causes of the weight gain and correct them.

Member question: I’d like to know why you feel a rheumatologist is the appropriate doctor for this ailment.

McIlwain: Rheumatologists have followed patients with lupus over the years, in part because 90 or 95 percent of patients with lupus have joint pain, stiffness, and fatigue, and these symptoms or related symptoms are commonly the initial problems that cause a patient to go to a doctor. So over the years, rheumatologists have treated the arthritis and the related symptoms.

Since lupus can cause many other problems, ranging from kidney disease to anemia to lung disease to heart disease to headache and other neurological problems, it is very common for lupus patients to be followed by more than one specialist, and in those cases where one of the other problems is the main lupus-related problem, then a different specialist may be the main physician.

For instance, for lupus patients with kidney problems or kidney disease, with no other manifestations of lupus, we often recommend that the nephrologist direct treatment.

Member question: I have tested positive for ANA twice, as well as anemia, but other compliment tests have been negative. I have several symptoms of lupus, including joint pain, skin rash, hair loss, hand spasms, and migraine. Is it possible to have lupus?

McIlwain: Although 95 percent of patients with lupus have positive ANA tests, we find that everyone who has a positive ANA test does not necessarily have lupus. Other causes include a positive ANA test after a viral illness or positive ANA test caused by some medications, or simply a positive ANA test that either does not signify lupus or may be caused by other medical problems, such as rheumatoid arthritis. Your doctor will put it all together.

Since lupus is still diagnosed mainly clinically by looking at all the signs and symptoms as a whole, and then making a diagnosis, there can be cases in which there are feelings and signs which may mimic lupus, and your doctor will make a clinical judgment of the overall picture and blood test results to decide if, in fact, it is lupus, and what the best treatment would be. In many cases, your doctor may ask you to see another physician or clinic to confirm that diagnosis.

Member question: Is it possible to have a negative ANA but have lupus?

McIlwain: Up to 5 percent of patients with lupus may have a negative ANA. At times, patients with lupus may temporarily have a negative ANA, and on retesting it’s positive. So the answer is yes, a small percentage of patients who we think have the clinical picture of lupus seem to have a persistent negative ANA. But remember that it isn’t very common.

Member question: I was diagnosed with (SLE) lupus about five months ago. I’ve recently noticed the feeling like my skin is crawling getting increasingly worse (especially my legs). It only lasts a few seconds at a time. What would be a possible cause of this?

McIlwain: Those feelings are not specific for lupus, but the problem is that lupus can cause so many different signs, symptoms, and problems, that when there is an unexplained problem such as that, we suggest you talk with your physician to be sure whether it is or is not caused by lupus.

The feelings you’re describing could come from nerve-related problems with quite a few different possible causes, many of which may not be serious, but we feel it’s worthwhile to talk with your doctor and check it out to be sure.

Member question: Have you heard of the new natural product called MIRAC that is supposed to be good for lupus and arthritis?

McIlwain: There are a lot of similar products, and this brings up the possibility of nutritional and related treatments for lupus, especially when joint pain and stiffness and fatigue are prominent. Since 95 percent of patients suffer from pain, stiffness, morning stiffness, and fatigue, we often find there are many nonmedication ways to help control the feelings of lupus that are so common and so limiting. There are a number of supplements that may well decrease inflammation and pain, including such foods as ginger, foods that have high omega-3 content, such as many types of fish, and other dietary supplements and herbs.

Our suggestion is that if your doctor feels that it’s safe, and you try it for a few weeks to a month or two, you can find whether it gives you relief of pain, stiffness, or fatigue. We find there are many choices, including Super Malic, SAM-e, and many other supplements that can be tried. We also suggest that you read the label just to be sure which ingredients you’re taking, so you’ll know which give you a good response.

Member question: Can you name some foods that we should not eat?

McIlwain: Probably the most common foods that you should avoid are omega-6 fatty acids or foods that are high in animal fat. It seems that these foods in some people may give the body more chemicals to increase inflammation.

Some patients find that eliminating certain foods for a period of two to three weeks may improve symptoms, especially when joint pain and stiffness are involved. The problem is that this is hard to predict and also can be hard to complete, but we find from patients some of the most common foods that they tell us are helpful to eliminate include:

  • Corn products
  • Dairy products
  • Red meat
  • Tomato products
  • Wheat products

As you can guess, eliminating those completely in each case is usually pretty hard. But if you feel much better following elimination of one of those particular food types, the improvement might be worth it.

Member question: I have a question regarding sun sensitivity. I always burn on my nose and cheeks. I do not get a rash. Is this considered sun sensitivity in lupus?

McIlwain: What you describe would be sun sensitivity, but usually in typical lupus sun sensitivity we find a much more prominent reaction than normal. Some of this depends on your skin type and complexion and wearing sunscreen and the amount of sun exposure you’ve had.

We are most concerned when a person who has never had problems suddenly becomes very sun sensitive or develops very severe skin reactions or even triggers off a flare-up of lupus. Your doctor can help you decide, in your case, if the sun sensitivity is likely to be related to lupus.

Member question: Is it true that over time, constant use of plaquenil enables us to go in the sun longer?


Plaquenil is a really good medication and helps the skin and joint manifestations, so if it improves the overall activity of lupus, it might make you less sun sensitive. However, it’s still recommended that you use protection — sunscreen and clothing — because it is still possible that sun exposure could help increase the activity of lupus. This is different for each individual, but if your sun sensitivity improves, we would suggest that you then not increase your sun exposure deliberately.

Member question: I’ve read that fibromyalgia sometimes “goes away” at around age 70. Is that so, and is there a possibility that it could be true for lupus also?

McIlwain: Fibromyalgia is unpredictable, and it’s true it’s much less common by the age of 70, and it can come and go. We don’t expect it to go away, and in most patients we do expect to be able to control the pain and fatigue in fibromyalgia.

Systemic lupus may go into remission, especially with treatment, but it’s also unpredictable and we suggest that since it can become active again, with important complications, that patients who are fortunate and find themselves in remission continue follow-up from time to time to be sure no new problems from lupus develop and go untreated.

Member question:

I am a male who has had discoid lupus for about 10 years and have been experiencing joint pain and fatigue. Is it possible for the lupus to progress to the systemic kind?

McIlwain: Discoid lupus can progress to SLE, although it commonly remains discoid in many patients. Because of the possibility of systemic involvement, it would be a good idea to have a checkup occasionally to be sure it remains discoid and to prevent a new complication from progressing.

For instance, if the pattern of your discoid lupus changes, and you have a lot of new joint pain or joint swelling, or you develop fever or any new sign or feeling that you can’t explain, it would be a good idea to check with your doctor just to be sure that other medications would not be necessary.

Member question: Can a rheumatologist make a diagnosis just by looking at blood work and only seeing a person twice? I have headaches, fatigue, slight redness on my face, joint pain with no swelling, and high ANA. I was told it is false positive. Should I accept this?

McIlwain: Since everyone’s different, there are some cases that are so clear that a diagnosis can be made without delay. The more difficult situation is when all the problems are not straightforward and definitely related to lupus. Since most of the signs and feelings in lupus are not specific just for lupus and can be caused by other problems, it would be important to follow the ANA and be sure that actual SLE did not evolve later.

In these cases we often recommend repeat ANA in two or three months, if it seems to be false positive, unless we can find a specific reason to explain it.

Member question: Could an MRI help in the diagnosis of lupus?

McIlwain: It’s not the most common test, but it could eliminate the most common problems and it can be used in brain or CNS involvement to help rule out stroke or other problems. MRI can help us eliminate other problems that can happen along with lupus or mimic lupus, especially in the brain, and can help evaluate other organs.

An MRI is usually used as a test to help the overall diagnosis of medical problems and is less likely to give a specific diagnosis of SLE. It is more likely to show the effects of SLE on an organ.

Member question: Will a bone density scan show any arthritis, inflammation, or problems from lupus?

McIlwain: The bone density test will show if the bones are thin. That’s a really important problem if it occurs. We are finding it happens more commonly than was recognized in the past, especially in women around the time of menopause who have taken prednisone for their lupus, or who have had a family member with osteoporosis, or have other risk factors for osteoporosis, such as smoking cigarettes.

The current thinking is that women should consider the possibility of osteoporosis and osteopenia, which is thinning of the bone before osteoporosis, earlier than in years past. In the 40s and 50s it can be detected by bone density tests so that simple steps can be taken to prevent further bone loss and to prevent osteoporosis altogether. But the diagnosis is almost never made unless a bone density test is done.

Member question: Could you make a few comments on the role of support groups, both the online type and “face-to-face” live ones, the values of each, and how to get a live one started when so many lupies don’t have the “energy” and may find online easier?

McIlwain: We think support groups are very good to help others get good information about treatment and diagnosis. The traditional support group has been live-in-person, and may be sponsored by the Lupus Foundation or Arthritis Foundation in your city, and may also be sponsored by your local hospital or your rheumatologist.

The problem has been that it’s difficult to pick a time when everyone can go to one meeting place, so the times often have to vary. Then some meetings can’t happen because of illness or flare-ups of lupus. So we think the online support group may help patients who would not otherwise be able to participate. The online support groups may also be preferred by some patients because of lack of individual names, and therefore we find that online situations may allow more openness and more honesty in some patients.

The way to connect with those would be through WebMD, the lupus or arthritis foundations, and actually searching online for support groups. We find that word of mouth is usually a really good recommendation if you know someone who’s had a good experience.

Moderator: Dr. McIlwain, do you have any closing comments for us?

McIlwain: I think the main recommendation is to first get a diagnosis, to make sure it is lupus and only lupus. Many lupus patients have other problems that are treatable, such as fibromyalgia or other joint problems such as osteoarthritis.

Remember to explore all the available treatments, including:

  • Exercise for the joints and muscles, which can actually improve energy
  • A good nutritional plan
  • The many safe and effective alternative treatments
  • Body work and massage, which can give relief from pain and stiffness
  • The many ways to manage the stress that all lupus patients have — use your mind power
  • All of these are in addition to the basic medications to control the different manifestations of lupus.

Moderator: Thanks to Dr. Harris McIlwain, for sharing his expertise on lupus with us. Be sure to pick up his book, “Pain Free Arthritis”. For more information, visit our message boards and check out our numerous articles and archived Live Event transcripts on WebMD.

WebMD content is provided to MSNBC by the editorial staff of WebMD. The MSNBC editorial staff does not participate in the creation of WebMD content and is not responsible for WebMD content. Remember that editorial content is never a substitute for a visit to a health care professional.