Chat Transcript for Dr. Ronenn Roubenoff
November 14, 2007

Moderator
Good afternoon. The Lupus Foundation of America is pleased to welcome Dr. Ronenn Roubenoff.

Dr. Ronenn Roubenoff is a Sr. Director of Immunology Medical Research at Biogen Idec, Inc. in Cambridge, MA. Dr. Roubenoff received his M.D. from Northwestern University in 1983, and trained in Internal Medicine and Rheumatology at the Johns Hopkins Hospital, where he was Chief Resident in Medicine. In 1990 he completed concurrent fellowships in Rheumatology and in Clinical Epidemiology at the Johns Hopkins, receiving a Master of Health Science degree. He then trained in nutrition at Tufts University with Irwin Rosenberg, and in immunology with Charles Dinarello.

Dr. Roubenoff has done pioneering work on the interactions of nutrition, exercise and hormonal and immune regulators of metabolism in aging and chronic disease, including rheumatoid arthritis and osteoarthritis. He has published more than 200 papers in the medical literature as well as writing for lay audiences. He is co-author of a New York Times Bestselling book on exercise and nutrition treatment of arthritis.

We welcome Dr. Roubenoff, and thank him for joining us this afternoon.

Moderator
Without further delay, let's begin. The first question comes to us from Arizona. Are Humira or Embrel ever appropriate for lupus joint pain?

Dr. Roubenoff
Enbrel, Humira, and Remicade are all medicines known as TNF inhibitors. They work well for rheumatoid, psoriatic, and other kinds of arthritis. BUT they sometimes CAUSE lupus, and are not thought to be useful for lupus even when arthritis is a key feature.

Moderator
I am 36 years old and was diagnosed with SLE Lupus 5 years ago, but have probably had lupus for around 8 years total. (It took 3 years to get diagnosed.) How many years can someone live with lupus and what can I do now to help me live the longest I can? -- Lexington, KY

Dr. Roubenoff
People can and often do live a normal life span with lupus. In the 1950s when there was no treatment, half of people with lupus died within 5 years of diagnosis. Today, about 95% of people live more than 10 years, and the vast majority live a normal life span.

Moderator
What about L-carnitine to boost energy, and to fight fatigue and feeling weak? Are there any side effects? I'm suffering from lupus with serious kidney problems: nephritis (type IV WHO). -- Madrid, Spain

Dr. Roubenoff
L-Carnitine is an unproven remedy. There are no studies showing it helps fatigue. Unfortunately, fatigue is the hardest symptom to treat in all the rheumatic diseases, including lupus. It is the first to start, and the last to leave. The treatments are to correct iron deficiency, correct anemia if possible, and work on an exercise program that includes aerobic and strength training which does not over-do it.

sam
I have antiphospholipid antibody syndrome, in addition to SLE. I am having significant short term memory/cognitive problems and I am only 48. What can I do to deter this process from progessing?

Dr. Roubenoff
This is a tough problem. For APS, it is important to review with your doctor what sort of anti-coagulant treatment you need, if any. For the brain issues, it is important to make sure you don't have another cause - like vitamin B12 deficiency, high blood pressure or atherosclerosis, etc. Some of the medicines we use for lupus, like high dose steroids, can also cause problems with memory and concentration. Finally, make sure you are taking care of yourself -- no smoking, good diet, moderate exercise, etc.

Moderator
Does eating red meat play a major factor in causing inflammation for lupus patients? -- Fitzroy Harbour, ON

Dr. Roubenoff
Some foods increase inflammation, and other decrease it, but it is the total dietary pattern that is more important. In general, diets high in fish, fish oil, olive oil, and green tea are anti-inflammatory. Diets high in saturated fat (like in red meat), peanut oil, corn oil, cocoanut oil, palm oil (especially found in fast foods) are pro-inflammatory and should be avoided. But there is no food that causes anything -- so you should not be eliminating foods from your diet. Better to make your overall diet helpful to you.

Moderator
I've read that taking prednisone ages a patient. Is that true? -- Winnipeg, Manitoba

Dr. Roubenoff
Prednisone's ingredient is a normal hormone produced in the body, cortisone. It is one of the main stress hormones in the body, and when it is high, it changes many aspects of metabolism. So high doses of prednisone over many years can cause a lot of effects that also happen more slowly with normal aging -- cataracts, weight gain, high blood pressure, ulcers, thin skin, etc. On the other hand, prednisone is one of the most effective anti-inflammatory agents available (Nobel prize for medicine in 1950). But yes, it is a double-edged sword.

V
How about the TNF inhibitors for overlap syndromes with features of lupus and dermatomyositis?

Dr. Roubenoff
That's a tough call -- it may be worth a try if the main symptoms are in the joints and muscle, less so if they are in the skin and blood. So I would try other things first, but if there is no good response, a trial of TNF inhibitors is worthwhile. I would use the shortest-acting one (Enbrel).

Moderator
I am 44 years old and have had SLE for 7 yrs. Do symptoms tend to improve or get worse with age? -- Midlothian, VA

Dr. Roubenoff
In general, "activity" of disease goes down, but "severity" can go up. What does that mean? Activity is how much inflammation and auto-immunity you have now. Severity is the sum of how much you have had and how much damage it has caused. So with age (and time from diagnosis) we see lupus activity go down a lot, and you should need less medication. On the other hand, the toll on your body can go up (or not), and you may need physical therapy, joint replacements or other non-pharmacological treatments as you age. But aging beats the alternative :-)

Moderator
Please explain the relationship between the hormonal supplement DHEA and lupus. I was recently advised by my doctor to take 10 mg/day. -- Sarasota, FL

Dr. Roubenoff
There are clinical trials showing that DHEA is better than placebo at treating signs and symptoms of lupus, especially skin and joint problems, and to a lesser extent fatigue. DHEA is safe and is worth a try -- if you don't get better after about 3 months, though, it is probably time to try something else.

Sammi
I am 59 and was diagnosed with lupus 7 years ago. With clean eating and carbohydrate elimination and strength training, I find many symptoms modifying. However, I still have muscle jerking. I am on Remicade for psoriasis. Should I be taking a closer look at decreasing Remicade?

Dr. Roubenoff
I don't think it's the Remicade. It is possible that you also have Restless Leg Syndrome (RLS), which can happen at your age. You can learn more about it at www.rls.org.

Moderator
Our daughter has had lupus for 7 years and has been taking prednisone along with two medications. Every time the doctor tries to wean her off the prednisone, she has bad flares and gets real sick. My question is this ... what will happen when the prednisone no longer works, or her body becomes immune to that drug? What is next? She also has muscle disease and severe Raynaud's. It has been a roller coaster ride for her for seven years. What is the life span of a person with lupus? -- Marinette, WI

Dr. Roubenoff
You don't say how old she is, but there are many "steroid-sparing" agents that can be used to reduce the dependence on prednisone. These include Plaquenil (hydroxchloroquine), DHEA, and dapsone. As I mentioned above, life span with lupus can be shortened, but that is not nearly as common as it used to be. Make sure your daughter sees a rheumatologist with experience in lupus.

Alabama
I have read that after 7 years, hydroxychloroquine leaves deposits behind your lens on your retina. Does the length of time you take this drug play a role in retina deposits?

Dr. Roubenoff
The key issue with hydroxycholoroquine deposition in the eye is the daily dose -- we never see this with 400 mg per day or less. Fortunately, these deposits are easily seen by an eye doctor during an eye exam -- you should have one annually. If deposits are seen, the drug should be stopped, but if they are not there, you're good for another year. They don't grow quickly, and I don't think you need to worry about 7 years.

B4MYTIME
I submitted a question prior to this chat regarding lupus and osteoporosis. I am a 44 year old female, not in menopause, but in peri-menopause. All my hormones are normal. I recently had a bone density scan which revealed that I have osteoporosis. Is this a common thing with Lupus SLE patients, prior to menopause?

Dr. Roubenoff
Yes it is. First, if you took prednisone, that would accelerate bone loss. Second, menopause is often early in women with lupus -- it is important to check LH and FSH about 3-5 days after your period to confirm this is not the case. A routine estrogen is not enough. Finally, your weight, family history, and smoking history could all contribute to early bone loss.

sam
Please tell me if Plaquenil can cause seizures. I have been seizure-free for many, many years. Since starting Plaquenil, I suddenly began having seizures again. Is this a coincidence? I will remain on it, as it has been a lifesaver for my joint pain. I just need to know. Thanks.

Dr. Roubenoff
Yes, high doses of Plaquenil can cause seizures. You should not be taking more than 400 mg/day in any case.

maritzap
How about hormone replacement and lupus? I am a 54 year old female.

Dr. Roubenoff
This question is a common one, and was addressed by a large study in Annals of Internal Medicine in 2005. Here is the conclusion: Adding a short course of hormone replacement therapy (HRT) is associated with a small risk for increasing the natural flare rate of lupus. Most of these flares are mild to moderate. The benefits of HRT can be balanced against the risk for flare because HRT did not significantly increase the risk for severe flare compared with placebo.

Moderator
I have vasculitis in my legs. I am 44 years old with SLE. I am taking prednisone, Plaquenil, and Imuran. It's been extremely painful. What are the health dangers of having vasculitis along with lupus? What is the prognosis? Tests have confirmed it's contained to my skin. -- Quapaw, OK

Dr. Roubenoff
Vasculitis is one of the most painful and frightening complications of lupus, and lupus is the most common cause of vasculitis. Depending on the type of vasculitis you have, the prognosis differs. On the whole, though, treatment of lupus and vasculitis is the same, so you don't need more drugs or different ones, though you may need higher doses or longer treatment time. Hang in there!

Moderator
What does lupus do to the kidneys in people over 60? And what is the medicine or therapy that helps? -- Kansas City, MO

Dr. Roubenoff
Lupus is actually less likely to affect the kidneys when it strikes in older people than when it happens to younger ones, though we don't know why. Treatment is the same regardless of age -- steroids (prednisone) and azathioprine (Imuran) or cyclophosphamide (Cytoxan). These medicines are harder for older people to tolerate, however.

Alabama
Is B12 insufficiency common with SLE? What does a B12 deficiency do to the body?

Dr. Roubenoff
Vitamin B12 deficiency is not more common in SLE than in other people, and it is easily measured with a blood test. B12 deficiency causes anemia and later on can lead to nerve damage and dementia. The main dietary source of B12 is animal foods -- meat, liver, etc. -- so vegetarians are more prone to B12 deficiency and should take B12 supplements.

Moderator
I was diagnosed 3 years ago with Class IV Lupus nephritis (I'm a male now 61 years of age). My major complaint is fatigue. I have used DHEA, 150mg daily, with some success. Please address fatigue and any suggestions. -- Lakewood, CO

Dr. Roubenoff
Fatigue is a bear -- we don't have any good treatments except exercise. Secondary causes -- thyroid problems, anemia, iron deficiency -- should be looked for and fixed if possible. If you are anemic (hematocrit < 38) you will have fatigue and there's nothing that we can do about it except try to get your blood volume up. With kidney disease, I'm afraid that means EPO treatment, and that can be hazardous and is certainly expensive. If you have fatigue despite normal blood counts, a moderate aerobic exercise program may be the best solution. Check with your local Arthritis Foundation chapter about their PACE (People with Arthritis Can Exercise) program.

Moderator
Can lupus affect weight loss? I have been training a female for 11 months and although her blood pressure, cholesterol, and resting heart rate has gone down, she has lost minimal weight. She was on 12 different meds and now is only on one. It is not a steroid so I am wondering why the weight it not coming off. She is lifting weights three times a week and doing 30 minutes of cardio on 5 days a week. -- Chattanooga, TN

Dr. Roubenoff
We are all subject to the laws of thermodynamics. If we burn more calories than we eat, we lose weight, and if we eat more than we burn, we gain. If your client is weight stable, she is in energy balance. The only way to get her into negative balance will be to reduce her intake. I doubt you can make her burn much more given the exercise regimen already in place. I suggest having her see a dietitian for a dietary history and prescription for a lower intake diet.

Moderator
Can someone get off prednisone after having taken it for a year? -- Shreveport, LA

Dr. Roubenoff
We should always be trying to lower the prednisone dose. There are two reasons not to -- active disease, or steroid withdrawal syndrome. Active lupus means you need the prednisone, so we don't taper till the symptoms cool off. Once they do, the prednisone has suppressed the body's own production of cortisol, and the adrenal glands have to "wake up" and start making it again. This takes months, and is the reason for tapering prednisone slowly and carefully. If you stop prednisone abruptly, you can feel horrible, drop your blood pressure, and be unable to deal with even a minor infection, which can become lethal. So the length of time you've taken the drug is not the issue -- it is the clinical situation that matters.

Moderator
I've heard that lupus can "burn out" in your 60s. Is there any statistical truth to this? -- NY, NY

Dr. Roubenoff
Yes, absolutely, lupus can go into "remission" (with drugs, usually), and stay there off drugs. It can also "burn out" in the sense that there can be some blood test abnormalities and old damage, but no active inflammation. It can happen at any age, though.

Moderator
That is all the time we have for today's chat. Thank you to Dr. Roubenoff for joining us.

Please join us Wednesday, December 12 at 3 p.m. EST for our guest Dr. Peter Chira, from the Stanford University School of Medicine. Dr. Chira will discuss teens and lupus.

Help spread the word about our lupus chats. See you next time.