"Healthy Aging & Lupus" Chat Transcript for Dr. Ronenn Roubenoff
September 18, 2008Moderator
Good afternoon. The Lupus Foundation of America is pleased to welcome Dr. Ronenn Roubenoff.
Dr. Ronenn Roubenoff is a Senior 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.
Without further delay, let's begin. The first question comes to us from Kentucky.
Does "lupus fog" or having other CNS involvement increase the risk of developing Alzheimer’s?
Dr. Roubenoff
No one knows for sure, but probably not directly. That is, the risk of Alzheimer’s is not related to lupus, but if someone has had brain effects from lupus, they would have less reserve capacity with which to deal with Alzheimer’s. So that if someone does get Alzheimer’s later, the damage would be cumulative with the lupus damage from before.
Moderator
Can lupus destroy hormones, e.g. estrogen, progesterone, testosterone? I am 65 years old and found out that I have virtually no progesterone or testosterone. I am on estradiol, because whenever I have stopped using it, I become suicidal. I assume that I don't have any estrogen either. Could lupus be responsible for this? -- Clarence, NY
Dr. Roubenoff
No, lupus does not affect hormone levels unless there is direct damage to the adrenal glands. However, at age 65 your hormone levels are down after menopause if you are a woman. In men there is a similar decline called “andropause.” Talk to your doctor and see if you need any additional replacement hormones.
Moderator
I’ve had diabetes for 14 years and have now been diagnosed with lupus. What can I expect? -- Mo. Valley, IA
Dr. Roubenoff
If you need prednisone for lupus, your diabetes will be harder to control, and you may need a change in your diabetes medicines or insulin. Both lupus and diabetes can cause damage to the same organs -- kidney, heart, liver, brain -- so you have to be followed closely for these problems. Finally, the risk of atherosclerosis (hardening of the arteries) is increased with both diabetes and lupus, and that risk is probably added together if you have both. So don’t smoke, watch what you eat, make sure your weight is in the recommended range, and have your blood pressure checked regularly.
Moderator
I was recently diagnosed with lupus and scleroderma. How common is it to have both of these illnesses at the same time, and will Prednisone and Plaquenil work for both illnesses? Also I take vitamin supplements to help; is this okay to do? -- Marlton, NJ
Dr. Roubenoff
The overlap of lupus and scleroderma happens more often than by chance alone. Prednisone and Plaquenil (hydroxychloroquine) will work for lupus but won’t generally do much for scleroderma; unfortunately we don’t have any good treatments for that.
Moderator
I was diagnosed with lupus in August 2002. My lupus remains very active. What should my diet consist of? I have heart, lungs, kidney, skin, nervous system & blood involvement. -- Ypsilanti, MI
Dr. Roubenoff
There is no dietary “cure” for lupus, but diet choices can have a general pro-inflammatory or anti-inflammatory effect. For example, saturated fats are more pro-inflammatory than polyunsaturated fatty acids from fish, such as EPA and DHA, which are found in fish oil. These are sold over the counter in 1-gram capsules. A diet rich in fish and low in fats from meat could be helpful against the inflammation of lupus, and also helpful if you have the lupus anticoagulant that makes you more prone to clot. It is also a good diet for reducing the risk of heart disease, which is also increased in lupus. A multi-vitamin every day is also a good idea, but there is no evidence that high doses of vitamins (megavitamins) are useful. Calcium and iron are also important for women with lupus, especially if they take prednisone.
fiddlegal
Is anything known about what causes late-onset (mid-60s) lupus?
Dr. Roubenoff
Not really. It's thought that diseases that occur in young adulthood have a more genetic component, and those that occur later are more related to environment, but we don't really know much about environmental causes of lupus.
jlee
Is there a connection between hypothyroidism and lupus? I was diagnosed with thyroid problem over 30 years ago, and with lupus this year.
Dr. Roubenoff
There are many causes of hypothyroidism, and one of them is autoimmune thyroid disease. That is associated with lupus, and it could be the case with you. You may have had antibodies against the thyroid back then, and now you have some new antibodies against other portions of your body that can lead to systemic lupus.
Moderator
How does aging of a lupus patient differ from that of a person without lupus? What diseases are more common and what complications are faced by lupus patients? -- Holt, MI
Dr. Roubenoff
Lupus (and its treatment) accelerates many facets of "normal" aging -- osteoporosis, heart disease, hardening of the arteries, cataracts, etc. It's not so much that the lupus patient ages differently from a person without lupus, it's that it happens faster. The best you can do is keep as active as possible, try to keep your diet low in saturated fats and your weight in the normal range, don't smoke, and work with your doctor to keep your lupus under control.
Moderator
Is there a certain diet that I should be following if I have just learned that I have moderate loss of kidney function?
Dr. Roubenoff
There is good evidence from a large clinical trial called the MDRD Study, that a diet which restricts protein can help slow the progression of renal disease. However, if you are taking prednisone for lupus it actually increases your protein requirements. Ask your doctor to refer you to a registered dietitian for a consultation.
Moderator
Have there been any research studies conducted concerning menopausal women who have SLE? What's your advice for patients with SLE concerning how to successfully manage menopause?
Dr. Roubenoff
I don’t know of specific studies for lupus, but there is some evidence that soy milk and soy protein can reduce the symptoms of menopause. You might consider switching from dairy to soy products for 2-3 months to see if this helps you. Make sure you maintain your calcium intake, though. As you go through menopause your calcium requirements go up to about 1200 mg a day. You can supplement your calcium intake with Tums, 2 extra strength tablets per day.
Moderator
Are there foods that are considered "good" and should be eaten or "bad" and avoided by those with lupus?
Dr. Roubenoff
No, there are no bad foods, only bad diets. Please see answers above.
sue
Have you ever seen enormously high levels of Vitamin D in a blood test on someone diagnosed with lupus 7 years ago?
Dr. Roubenoff
Yes, certainly, it's called hypervitaminosis D, and it's seen in people who have taken too much vitamin D, either accidentally or through megavitamin therapy. Too much vitamin D can lead to kidney stones, high blood calcium, and other problems, and can be dangerous.
Tampa28
How do you feel about methotrexate as a treatment method?
Dr. Roubenoff
MTX is very useful in treating joint inflammation in lupus (arthritis), but it has not worked for kidney or brain involvement and not much for skin either. So it depends on the type of lupus you have.
Moderator
I have high cholesterol level; my total cholesterol and LDL are above normal value. I love cheese and I am a meat lover. I will regulate the intake of meat. My question is can I still eat cheese occasionally? Can lupus patients drink wine?
Dr. Roubenoff
Yes, occasional cheese is fine. It’s the amount at each sitting that is the hard part to regulate. If you can switch to lower fat cheeses, that would help. Wine is fine, especially red wine, in moderation -- a glass a day will reduce risk of heart disease and stroke.
Moderator
Can a person have an almost normal life, even with a life long treatment with Plaquenil and prednisone? Can we have long term plans? I am 25 and I was diagnosed 1 year ago.
Dr. Roubenoff
Absolutely! The 10 year survival rate with lupus is over 95%, and the 20-year survival rate is over 90%. People take Plaquenil (hydroxychloroquine) for decades without ill effects, as long as you get your eyes checked every six months. I hope you won’t need long-term prednisone. I don’t know what is being treated, but you should work with your doctor to use the lowest dose that controls your symptoms.
astute225
Can stress affect lupus?
Dr. Roubenoff
Yes. Your immune system is one of the ways your body interacts with the outside world. Emotional stress activates the immune system through the brain, where emotions are translated into nerve signals that affect hormone and immune cell function. Also, there are immune signal receptors in the brain which respond to your white blood cells and alter mood and brain functions, including sleep and appetite. Physical stress, like sleep deprivation, a poor diet, and lack of exercise, also affect immune function (and thus lupus status) profoundly.
tam
Is it true -- 5 years without active lupus, there's a chance it will stay like that?
Dr. Roubenoff
The longer you are in remission, the more likely it is to stay that way. However, there is no iron-clad guarantee, I'm afraid.
Moderator
I am 48 years old and have had lupus for 23 years. My lupus has been in remission for past 5 years. I am currently on prednisolone 5mg alternate day. Is hydroxychloroquine recommended to replace prednisolone? If so, would it make any difference in relation to damage done by steroids over the years and facing the risks of developing eye problems?
Dr. Roubenoff
Hydroxychloroquine (Plaquenil, or HCQ) can definitely help reduce or discontinue steroids, such as prednisone or prednisolone. The risk of eye problems is virtually zero if you have your eyes checked by an ophthalmologist every 6 months as recommended, and keep the dose less than or equal to 400 mg/day.
Moderator
Is it true that after age 40 (or after entering menopause) the symptoms of lupus become less severe and the disease may essentially disappear? What about for lupus nephritis patients? -- Holt, MI
Dr. Roubenoff
We know estrogen is important to the development of lupus, because 90% of people with lupus are women, and most of them get the disease before menopause. However, whether people get better after menopause (which averages age 52 in the US, not 40) is a matter of luck. If there is internal organ damage, such as lupus nephritis, I would not expect remission after menopause. Skin and joints seem most likely to improve. However, what happens in a thousand patients doesn't necessarily happen in any one of them, so there's now way to tell if that will happen to you or not.
Moderator
Could it be possible that lupus might be parts of Lyme disease or related to Lyme disease?
Dr. Roubenoff
Certainly a person with lupus can get Lyme disease like anyone else who gets bitten by an infected tick. But the diseases are pretty easy to distinguish on blood tests. Lyme disease is often over-diagnosed and should not cause full-blown lupus.
fiddlegal
How important is it to avoid people with colds, viruses, etc.? I don't understand the autoimmune function and what triggers it: is it more stress or overexposure to viruses?
Dr. Roubenoff
I don't think it's realistic to avoid people with viruses, because they are most infectious BEFORE they have symptoms themselves. Virus infections can worsen lupus, and people with lupus have a harder time clearing viruses (especially if they are treated with immune suppressants or prednisone). The most important thing you can do is wash your hands frequently, and carry a bottle of hand sanitizer with you. Masks and avoidance are not worth the social isolation.
Moderator
Are there any new drugs on the horizon for the treatment of lupus? It seems that there have been many new discoveries in other areas (RA), but little in the area of lupus. Do the biologics help with the treatment of lupus? -- Greensboro, NC
Dr. Roubenoff
Yes, there is a huge number of clinical trials under way. Unfortunately, lupus has proven much tougher than RA to treat. The TNF inhibitors, which work great in RA, do not work in lupus and can worsen the disease. Several promising drug candidates that worked great in mice have recently failed in human trials of SLE, but we are continuing to try new molecules. I think in the next 5-10 years we'll see some real progress.
tam
Is hair loss is a lupus result, and if yes what can be done?
Dr. Roubenoff
Hair loss can be caused by lupus, by thyroid disease, by prednisone, by Plaquenil … inflammation itself can cause hair loss. The best we can do is control the lupus with the lowest dose of steroid possible and see how it goes. Unfortunately, we have no way to re-grow hair until the SLE is in remission (and not always then either).
Roxy
Is it common for autoimmune disorders to run in some families and not in others? And why?
Dr. Roubenoff
Yes, absolutely. Autoimmune diseases are caused by an interaction between the genes that control the immune system and exposure to a trigger in the environment. We have been finding more and more genes that are important for risk of lupus and RA. Of course, these run in families. Unfortunately, we don't have a good handle on what the environmental exposures are. But the new genes that have been identified are being tested to see if they could lead to new drug targets for treatment of SLE and RA.
raku
Can muscle pain be caused by lupus, or is it mainly fibromyalgia?
Dr. Roubenoff
Both lupus and fibro cause muscle pain, joint pain, and general achiness. The main distinction is the presence of tender points on physical examination, because these are caused by fibro but not by lupus. As many as 1/3 of patients with lupus could also have fibro overlap.
tam
What is the connection between lupus and sun?
Dr. Roubenoff
Ultraviolet light from sunshine activates immune cells living in the skin, called dendritic cells, which can worsen lupus. This is the reason that patients with lupus are often sick after sun exposure, and are warned to stay out of the sun.
Moderator
How important is Vitamin C for people living with lupus? Is there a mineral/other substance that would utilize Vitamin C?
Dr. Roubenoff
Vitamin C is important for collagen formation, which is needed to heal the skin, joints, and other organs damaged by lupus. It is also important for white blood cell function to fight infections. Patients with lupus should get at least the RDA of vitamin C (as a one-a-day type vitamin or through fruit and fruit juices). The RDA is probably a little low at 100 mg/d, but be careful of mega-dose vitamin C. It can cause kidney stones and stomach upset. No more than 500 mg per day under any circumstance.
Marie
Are there certain lights that can have the same effect as the sun on lupus patients?
Dr. Roubenoff
Some patients are so sensitive that being inside near a window is enough to trigger photosensitivity (sun sickness). Indoor lights are rarely a problem, but fluorescent lights do have some UV production (less than 1% of sunlight - that's why we don't tan in the office!).
caryn
With the finds of lupus in genetics, are parents of lupus patients who do not have lupus, tested? I'm curious to know if that’s how my child got lupus, through a genetic component.
Dr. Roubenoff
Yes, you can be tested, but right now we don't really know enough about which genes are important in causing lupus. I don't think anyone could interpret the information for you yet. If your child developed lupus at a young age, it's pretty clear that there is a genetic component, but we can't take that away from either them or you. So there is no therapy that we can base on the information even if we had it. Maybe in 10 years??
astute225
How can a lupus flare be detected?
Dr. Roubenoff
A flare is a worsening of the lupus that happens above the baseline level of disease activity. It's usually in the same organ or systems that have been affected -- lupus rarely learns new tricks later in its course. So if the patient feels worse, there is no evidence of another cause such as infection, etc., and blood tests show increased levels of inflammation or auto-antibodies, we call that a flare.
Roxy
If someone has always been known to have headaches and migraines, how would you know if this was ever triggered by the lupus?
Dr. Roubenoff
It's often hard to tell. The classic lupus headache responds to moderate dose steroids (20 mg or so of prednisone), but some migraines do also. And migraine treatment can help even in patients with lupus. If it's a classic migraine with vision changes and nausea, and preceded the diagnosis of lupus by at least several years, then I would assume that's a migraine if it happens after the diagnosis of lupus.
Kimbo
Does blood work always coincide with a lupus flare?
Dr. Roubenoff
No, there are many people in whom flares don't coincide with blood test changes at all. But within a patient, if they have a blood test change with one flare, it usually happens again with later flares as well.
Moderator
I have heard that people with lupus should not eat beef. Is this true? Will it cause my lupus to flare more often? -- Deming, NM
Dr. Roubenoff
Saturated fats can activate the immune system, and fatty beef is a main source of these. But lean beef (90% or more fat-free) is a great source of protein. I don't think any single meal can cause a flare, but the diet can over time promote pro- or anti-inflammatory effects. In that setting, a diet high in fish and low in saturated fats is better than the opposite.
jlee
I have been diagnosed with secondary Sjogren’s. What kinds of eye issues, besides dryness, are a concern? Previous posts talked of eye exams every 6 months. My insurance company won't pay for that frequent. What symptoms should I be concerned about?
Dr. Roubenoff
The six-month frequency is for following patients on Plaquenil, and insurance usually pays for that (though your doctor may have to argue with them). For Sjogren's, the dry eyes can increase the risk of infections such as styes and pink-eye, and of corneal abrasions, which really hurt. Keep a bottle of artificial tears with you at all time and take it frequently -- keep your eyes moist. Use the tears when you first wake up and any time your eyes feel gritty or irritated.
raku
Does Prednisone or Plaquenil affect the results of blood test while you're on them?
Dr. Roubenoff
Plaquenil can cause low blood cell counts and abnormal liver chemistry tests. Prednisone can cause high white blood cell counts, abnormal liver chemistry tests, and elevated blood glucose (sugar).
Moderator
That is all the time we have for today’s chat. Thank you to Dr. Roubenoff for joining us.
Please join us Wednesday, October 8 at 3 p.m. ET for our guest Dr. Bonnie Bermas, from the Systemic Lupus Erythematosus and Antiphospholipid Syndrome Center. Dr. Bermas will discuss reproductive health and lupus.
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