Lupus Alert Day

WebMD Live Events Transcript

April 1, 2004 was Lupus Alert Day and the perfect time to learn more about living with this mysterious and sometimes debilitating disease. We took time on this annual day of extra awareness us to ask about symptoms, diagnosis, and treatment with rheumatologist Harris McIlwain, MD.

The opinions expressed herein are the guests' alone and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.

MEMBER QUESTION:
My mom passed away after suffering from lupus (internal) in the early '80s. Now, my uncle -- on my dad's side, is also suffering from it (external). Are there any measures I can take with my two daughters as well as myself to possibly avert the disease?

MCILWAIN:
There are no known ways to completely prevent lupus, but because of the experience in your family it will allow you to practice early detection and prevention of the more serious complications. The good news is that there are so many effective treatments that the life expectancy for most lupus patients is normal, and the treatments we have today could have prevented many complications if they had been available years ago.

You may want to have an ANA done, a test for any interested family member to allow early detection and prevention, but be aware that up to 20% of family members of a patient with lupus may have a positive ANA with no symptoms.

MEMBER QUESTION:
I keep breaking rib bones and I don't do a whole lot anymore, but could it be that the prednisone has depleted my bones or something like that?

MCILWAIN:
The answer is yes. Lupus alone may increase the risk of osteoporosis, which is bone thinning, and increase the risk of fracture, but the most common situation is more rapid thinning of bones from prednisone, which might be needed to treat lupus. So at this time, when patients take prednisone, more than 5 milligrams daily, for more than three months, there are simple medicines you can take that can prevent bone loss and fractures. Prednisone can cause fractures when it's taken for many other problems as well. So this prevention medication should be considered in anyone who takes prednisone regularly.

You also should have a bone density test so your doctor can help make the bones stay as strong as possible.

MEMBER QUESTION:
What is the current treatment for someone with both Lupus and MS?

MCILWAIN:
MS can happen to a patient with lupus and usually, depending on which of the two problems is more active and creating more problems for that patient, the neurologist will give the possible treatment of the MS, and the lupus specialist will maximize the treatment for lupus. There are many cases in which the medicines for one condition can also help the other, but it takes coordination and it's important that you protect yourself by making sure that each of your doctors knows what treatments you are taking. There are some medications that might want to be avoided in your own situation that could aggravate another underlying problem.

"Many years ago it was wondered if birth control pills might trigger off a positive ANA test or lupus, but there has not been any good evidence to prove that. On the other hand, some hormones such as estrogen may in some patients seem to increase inflammation and some types of arthritis."


MEMBER QUESTION:
An alternative medicine doctor has told me that my lupus is probably caused by a wheat allergy or some other kind of food allergy. How valid is this idea? Is this something I should pursue? I've had lupus for 15 years and haven't heard this yet from a rheumie.

MCILWAIN:
We don't know the exact cause of lupus and there has always been a question as to whether it might be triggered by an allergy. When this has been tested specifically so far no one has found any good evidence that allergies create lupus. But it is very possible that if you have allergies to foods or other contacts in your environment that this could aggravate lupus or other inflammatory problems.

The best way to find out, since it's so unpredictable, would be to eliminate foods one by one for a few weeks and see if you can tell a difference. We find that although a minority of patients find that the food makes a very big difference, those patients usually think it was very worthwhile to discover and receive that much improvement.

The most common examples that we see in our practice of foods that can make inflammation worse are corn products, dairy products, wheat products, citrus products, tomato products, yeast, and soybean.

MEMBER QUESTION:
No one else in my family has the disease; how did it inflict me? What are the contributing factors?

MCILWAIN:
That's a great question, and actually most people who have lupus don't have family members who seem to pass it on. And remember, we don't know the exact cause in most cases. But some believe that certain triggers, such as medications or viruses or other triggers we don't know, may make the body create inflammation that can cause damage in lupus in any organ. We also don't know why some organs like the kidneys or the skin or the joints may be more affected in one person than another.

MEMBER QUESTION:
How do you feel about women who have been diagnosed with lupus being on birth control, or does it have to be based on the individual's history?

MCILWAIN:
It is necessary to be based as an individual decision for each patient. Many years ago it was wondered if birth control pills might trigger off a positive ANA test or lupus, but there has not been any good evidence to prove that. On the other hand, some hormones such as estrogen may in some patients seem to increase inflammation and some types of arthritis. So it's very important that you talk with your doctor and see if the benefits of birth control pills outweigh any possible negative affects in your own case.

MEMBER QUESTION:
I can't take NSAIDS. I have tried them all and have severe fluid retention. I am currently taking prednisone, 12.5 milligrams. Is there anything new I might talk to my doctor about instead of prednisone?

MCILWAIN:
It depends on what problems the prednisone is treating in your lupus. Prednisone is the strongest of the anti-inflammatory drugs and can be very effective in controlling arthritis and other areas of inflammation in the body, but as we all know there are some real possible side effects. If you are trying to control joint pain and inflammation and fatigue, some other nonmedication ways to help would include:

  • A special exercise program, which if started slowly and carefully, can make stronger muscles give joints more support with less inflammation and pain, but it takes a few weeks to work.
  • Adjusting your diet to help inflammation. For instance, increasing omega-3 fatty acids, like those in fish oil and in many types of fish, provides the body with chemicals that create less inflammation. And reducing or lowering animal fat at the same time gives the body fewer chemicals to produce inflammation.
  • There are many safe and effective alternative treatments, including natural dietary supplements that can also decrease inflammation.
  • Simple treatments such as massage can be excellent pain relievers and help relax tense or painful muscles.
  • And don't forget the value of mind power to help control stress, improve sleep, and decrease pain.

MEMBER QUESTION:
Does lupus play a role in one getting blood clots easier?

MCILWAIN:
That's a great question. Over the past few years it has been discovered that some patients with lupus develop proteins in the blood that definitely increase the risk of clots in the arteries and veins, which may happen and seem to come out of nowhere, such as clots in the legs, which can cause blood clots to the lung, or clots and arteries that cause severe problems in many areas.

What is important is that if you have lupus and you've had problems with clots this can be detected and treated to prevent clots in the future. This particular problem has a very fancy name called antiphospholipid antibody syndrome, and your doctor can order blood tests to help detect it and decide if treatment is needed.

"It's often hard to diagnose because it can do so many different things, and the problems that allow us to make a specific diagnosis may not all appear at once."

MEMBER QUESTION:
I've read the recent articles about the association between lupus and heart disease. Is there anything that we can do to prevent the lupus-associated heart disease?

MCILWAIN:
There is more than one type of heart problem in lupus but what I think this refers to is the coronary heart disease that causes heart attacks. It has been found that lupus patients may be at higher risk for a heart attack and may be for several reasons, many of which might be overlooked because lupus is so common in women at ages that are not usually at very high risk for heart attack.

It's thought that perhaps a combination of high blood pressure, high cholesterol, and other lupus issues that may not be known somehow increase the risk of heart attack. When there is a higher risk of blood clotting, that could also contribute, so the bottom line is that we should give extra care towards prevention of coronary heart disease and heart attack in lupus patients who might not be watched so closely for heart disease otherwise.

This means controlling blood pressure, which is more common in lupus, controlling high cholesterol, keeping exercise at 20-30 minutes of walking a day, controlling weight, controlling diabetes, and if your doctor thinks it is OK, adding any 1-milligram aspirin daily can reduce the risk of heart attack or stroke.

So prevention and being aware that the risk of heart attack is there are most important.

MEMBER QUESTION:
I have a speckled pattern ANA of 1/80 in a blood test I had received almost three years ago. My doctor only gives me Celebrex for inflammation and pain as well as Lexapro, though I am not depressed. I have been suffering with this for three years, and the pain has gotten worse over the time, until now it's so bad, but he won't acknowledge the test from nearly three years ago. He did say I have Fibro back in September, but won't press further. I am at a loss, and there isn't much in the way of doctors around me besides him. Do you have any advice for me? I have a first cousin with both as well.

MCILWAIN:
If your ANA was positive 1 to 80 three years ago, it may be a good idea to repeat it, because the ANA, especially when it's not at a high level, may actually become negative. It would also be important to discover any other cause of the pain and inflammation, because the ANA test can be positive in other problems such as rheumatoid arthritis or other types of problems in arthritis.

If the ANA is still positive it might be a good idea to check a few other tests that are more specific, such as the anti-DNA antibody, or the anti-ENA antibody, but your doctor can tell you if it would be a good idea to do that in your own situation.

MEMBER QUESTION:
How big of a risk is lymphoma when taking methotrexate?

MCILWAIN:
It depends on why you are taking methotrexate. For instance, methotrexate is used in some problems that already have a higher chance of lymphoma, such as rheumatoid arthritis, but in lupus, methotrexate is thought to offer benefits in controlling the problems without a major increase in risk of lymphoma for most patients. This can be complicated, though, and would depend on your own situation.

MEMBER QUESTION:
Why is it so hard for some doctors to diagnose lupus? Is there a better test than the ANA and sedimentation rate?

MCILWAIN:
It's often hard to diagnose because it can do so many different things, and the problems that allow us to make a specific diagnosis may not all appear at once. So we still go mainly on the overall clinical pattern. The ANA is positive in about 95% of patients with lupus, but it can be positive without lupus and you can even have lupus with a negative ANA.

The anti-DNA test is more specific, and when it is positive it is pretty strong evidence for lupus, but it also may not be positive in every patient.

MEMBER QUESTION:
I have RA/Lupus/Sjogren's. I take 7.5 milligrams of methotrexate and 200 milligrams of Celebrex. I work out everyday now and have very little pain. Will I ever be able to go off all meds eventually or because this is not curable I will always be on them?

MCILWAIN:
You've taken good care of your problem and the exercise is very important to keep flexibility and strength and improve energy. Once you have stabilized and have felt good for a period of time, then your doctor can help you decide at what point it might be possible to try to slowly decrease the medications. If you do decide to lower the medication it would be very important that you do it very gradually, so that you could increase again before symptoms became severe.

MEMBER QUESTION:
Is there anything special that I should do now that I am pregnant?

MCILWAIN:
Congratulations. In pregnancy with lupus it's extremely important to be followed by your obstetrician, who is very familiar with lupus in pregnancy, so that you can be monitored to protect both you and the baby from complications of lupus. Pregnancies are common and can be successful, but you should just be extra careful in keeping close contact with your obstetrician, who may want to monitor some of the lupus blood tests during pregnancy.

"Once you have stabilized and have felt good for a period of time, then your doctor can help you decide at what point it might be possible to try to slowly decrease the medications."

MEMBER QUESTION:
I sometimes have to have high dose of IV steroids for the MS, 1000 milligrams daily for three days. Is this treatment ever used for lupus?

MCILWAIN:
It is used sometimes in lupus, but more commonly in MS, because we have other medications, but this is an example of one treatment that could benefit both problems. So it's important that you let the doctors treating both conditions be aware of new or changes in treatment, such as this.

MEMBER QUESTION:
How do you find a lupus specialist in your area?

MCILWAIN:
The most common specialty that deals with lupus is rheumatology, and part of the reason is that 95% of lupus patients have joint and muscle pain and stiffness, so over the years rheumatologists are often the lupus specialists. If a lupus patient develops a kidney problem or a heart problem or some other specific problem, then another doctor helps manage the patient. So you might call your local hospital or medical association and ask for the names of a few rheumatologists or lupus specialists in case they might have a separate listing for lupus.

MEMBER QUESTION:
I have been diagnosed with lupus, but my complement levels were high. Is there any significance to this?

MCILWAIN:
The complement levels are used to help decide activity of lupus and inflammation and some of the reaction that can cause damage in the body. Of most concerns is when complement levels are low, which usually happens when disease activity is increasing. But that test alone is not specific even though it's very helpful. And your doctor will look at that test as part of the whole picture to decide the best treatment in your own case.

MODERATOR:
We are almost out of time, Dr. McIlwain. Do you have any final words for us?

MCILWAIN:
I think these have been great questions. It's important to remember that lupus is treatable, that the life expectancy is normal, and that early detection to allow prevention and treatment of complications is very important.

MODERATOR:
Thanks to Harris McIlwain MD, for sharing his experience with us.

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