Jul 26, 2013
Answers About Rheumatoid Arthritis, Part 1
By THE NEW YORK TIMES
Readers sent more than 100 questions to Dr. Vivian P. Bykerk about rheumatoid arthritis, a disease that often starts in middle age and is more common in women.
Dr. Bykerk, a rheumatologist who has practiced for more than 20 years, is the director of research at the Inflammatory Arthritis Center at the Hospital for Special Surgery in Manhattan and a researcher at Weill Cornell Medical College. Her focus is the early detection of rheumatoid arthritis and the adoption of optimal treatment strategies. She was chairwoman of the Therapeutics Committee of the Canadian Rheumatology Association for four years and was the lead author of Canada’s rheumatoid arthritis treatment recommendations. Dr. Bykerk is currently working in collaboration with the Inflammatory Arthritis Center to develop a clinical research program in early rheumatoid arthritis.
Because of the volume of questions, not all may be answered. More answers will appear next week on Booming.
Thank you to all of you who wrote in with questions. I’m sorry I cannot answer each of you individually; however, I chose to answer questions with themes that you frequently addressed. Rheumatoid arthritis is one of the most destructive forms of arthritis. Unlike the more common osteoarthritis, R.A. is an autoimmune disease in which the immune system attacks and inflames the joints. It can cause serious damage to large and small joints and to many other organs in your body. I have found that early diagnosis with frequent early follow-up, along with an initially more intensive treatment strategy, is crucial in optimizing the best outcomes in this disease.
Q. I am 66, recently given a diagnosis of R.A. Was put on methotrexate/prednisone/folic acid. Am currently being weaned off prednisone. What are the long-term effects of methotrexate on the body? — globro, New York
A. Globro: This is a common question people ask with any medication, and it is often asked about methotrexate, given original fears 20 years ago about the liver. Prednisone probably has more significant long-term effects on the body in terms of negatively impacting bone health, causing skin thinning for some, weight gain for some, and increasing the risk for hypertension and diabetes, so I am glad you are weaning off this. Prednisone is very effective to use for flares and between other treatments while you are waiting for them to work.
Long-term effects of methotrexate are for the most part positive. Methotrexate has proved to be a good drug to help to control the inflammation of R.A. and other rheumatic diseases. Studies also show that patients whose R.A. is being controlled on methotrexate experience less cardiovascular disease. Your doctor should be monitoring blood tests every three or so months while on methotrexate. We like to see that liver, kidney and blood tests are normal. If this is the case, our experience with methotrexate over the last 30 years is that there are almost no significant long-term consequences and that benefits clearly outweigh risks. There is no doubt that a few patients (fewer than 10 percent) don’t feel well on methotrexate; usually the dose needs to be adjusted. We do recommend that patients taking methotrexate also take folic acid. Your doctor will advise you on this recommendation.
Q. I was given a diagnosis in December 2012 of mild-mod R.A., and started methotrexate in January 2013. In June I stopped methotrexate and began taking low-dose naltrexone (LDN). I discovered LDN on the Web after searching for infectious causes of R.A. I had heard an interview with Dr. Ewald on the People’s Pharmacy radio show about infections as the cause of some cancers and autoimmune disorders. It made perfect sense to me and reflected my experience (sudden onset of full blown RA after sinus infections and flu vaccine). I now take 4.5 milligrams of LDN per day and I feel better than I have in years. If I feel stiffness or pain late in the day ibuprofen helps but I rarely need it. LDN works by supporting the immune system and increasing the availability of endorphins. It is safe and F.D.A. approved (opiate addiction) at 50 milligrams per day (the max dose for R.A. is 4.5 milligrams per day). I try not to be cynical but it’s hard not to believe that big pharma plays a role in why this drug is not well known in the medical world. Another aspect of R.A. for many people, I believe, are intestinal issues. I had a diagnosis of leaky gut syndrome six months prior to onset of R.A. I have eliminated dairy and nightshade vegetables and take probiotics and other supplements to support my intestinal tract. LDN is helping with that, too, as it is effective for treating Crohns (and M.S.). Could you please comment on LDN, infections as a cause of R.A., the importance of diet and why most rheumatologists are so resistant to this approach? — Melissa, N.C.
A. Melissa has asked a number of questions. The first relates to low-dose naltrexone, which has helped her. This is a medication currently approved for use in alcohol and narcotic dependence, suggesting it plays a role at the level of the central nervous system. There have also been some recent, very small studies concluding that it has had some benefit in fibromyalgia. This suggests it might benefit central nervous system-mediated pain. In addition, there are many publications looking at whether it helps inflammation. Hopefully, this will be explored soon in a well-studied F.D.A.-approved clinical trial where both safety and benefits are better explored.
The second question relates to infection as a cause of rheumatoid arthritis. Again, this is an issue that is not well understood. It would seem for classical R.A., the role of infection may be only one aspect of why R.A. occurs (environment, genetics, smoking, oral health being others). Other forms of arthritis, like reactive arthritis, are set off by infection but a person needs to have certain susceptibility factors for this to occur. It is even less clear whether treating infection substantially improves arthritis. This is particularly because some antibiotics used to treat infection, like doxycycline, minocycline or tetracyclines, also have anti-inflammatory effects, so it is not known what these medications are actually achieving. Antibiotics are not without their own risks. Rheumatologists tend to be cautious and stick to therapies in proven scientific studies and approved by the F.D.A. Having said that, I am aware of rheumatology colleagues who have tried therapies targeted against infection, and too many noted their patients did not substantially improve; some developed side effects like lupus and problems with skin and teeth, and they abandoned these for treatments where they are more certain of a positive benefit to risk profile. Please see comments regarding diet in the response to CJ.
Q. I have psoriatic arthritis (but no psoriasis). I take 200 milligrams of Celebrex every day, which works quite well for me, and I also take over the counter Claritin for my dust allergy. I’ve noticed that if I run out of Claritin (while continuing the Celebrex), my arthritis will flare after a few days. Seems to me that there is a clear connection between allergies and arthritis. Do you think arthritis research is finding a connection between the two? My mother had untreatable rheumatoid arthritis and died after becoming bedridden in the last year of her life (2003). I’ve always wondered if she had been tested/treated for allergies, perhaps she would have had a better outcome. —belong, Mercer, Pa.
A. The question that “belong” raises about the connection between allergies and inflammatory arthritis, be it psoriatic or rheumatoid arthritis, is a good one. The immune system is complex: in general the part of the immune system that drives inflammatory arthritis is different from the part that drives allergies, but there are cells that overlap, like mast cells. Some scientists are working on the role of mast cells in inflammatory arthritis, and it may be that treatments that come out of this could impact allergy and arthritis. My experience is that most patients don’t see a relationship between their allergies and their arthritis.
RESEARCH AND TRENDS
Q. Scientists are making a connection between gut bacteria and the development of autoimmune diseases like rheumatoid arthritis. What are you thoughts on this, and what do you think the implications will be for R.A. treatments in the future? — salcar, Seattle
A. Indeed, there are some early data that patients with R.A. may have a different population of bacteria in their gut than people who do not. These data are based still on small samples, and what the impact of these bacteria are on inflammation and risk of R.A. is still not known. For now this question is still under investigation. We need to understand these gut bacteria in many diseases, in different cultures and ethnic populations, and in peoples whose diets or geographical location differ. We need to know what they do in healthy individuals. This is a hot scientific topic. If you are being asked to participate in a study where you need to provide stool samples, the aim is probably to better understand the gut bacteria (part of our microbiome). It may be that at some point in the future we will be able to identify bacteria that contribute to inflammation and would want to intervene with this. We are not there yet.
Q. My family members have a mix of autoimmune diseases: lupus, rheumatoid arthritis, allergies, chronic rhinitis. When can we hope for researchers to solve the continuing mystery of how to diminish the autoimmune response? — Kaly, Chatham, N.J.
A. Kaly, many researchers are looking at the genetic factors and other risk factors that predispose to “autoimmunity,” the phenomenon of the immune system attacking “self.” Many families like yours have a tendency for this. People like you, who have family members with autoimmune disorders like R.A., type I diabetes, celiac disease or autoimmune thyroid disease, may want to join these studies so we can find out what genes are turned on to increase the risk for R.A., for instance.
Q. What are some of the future trends or research that are really exciting regarding the treatment of rheumatoid arthritis? — Ryan, New York
A. Probably the most important trends are the attempts to personalize treatments and to develop more targeted treatments. In rheumatoid arthritis, we know different patients can have very different clinical courses. Some respond quickly to medications in current use and get into drug free remission. Others take longer, get damage and lose function. We want to be able to identify biological markers that correlate with treatment response, so we can choose the right therapy for the right person. With that goal in mind, many researchers are studying large panels of biomarkers in patients with new onset R.A. or those who are failing therapy.
Also, more is being understood about the exact molecular pathways that are involved in R.A., and treatments are being developed to target these using small molecules (pills or very small proteins). Many of us are very concerned that early loss of patent protection and shrinking funds for grants to researchers will compromise progress in these efforts.
Q. What are your thoughts on R.A. and fecal transplants? —CH, NYC
A. Certainly researchers looking at the gut microbiome are intrigued by this possibility as a therapeutic approach, but it is way too early to consider this.
Q. I was given a diagnosis of R.A. at 40. After a year of increasing doses of methotrexate and R.A. that would not stay managed, I switched to a vegan diet. Within weeks my symptoms faded. Doctors say coincidence, but the results have held, and I discontinued MTX. In your opinion, is there a link between diet and R.A. with some patients? Many thanks. — Darci K, Boston
Q. Please share your dietary approach: just the basics of what you’re doing. — MAS, Oregon
Q. Are there certain foods that I can prepare that will help my arthritis? —CJ, N.Y.C.
A. Many like CJ have asked about diet and arthritis. It is one of the most common questions rheumatologists and arthritis specialists come across. Ideally it would be terrific if we could alter our diet and help our arthritis. There are some studies that show the Mediterranean diet has helped arthritis, but when this was tried in a non-Mediterranean location the results could not be reproduced.
Several studies show anti-inflammatory benefits of omega-3 fatty acids. When used in high amounts they have an effect similar to nonsteroidal anti-inflammatory drugs (NSAIDs). You probably are aware of some NSAIDs like ibuprofen (Advil) or naproxen (Aleve). No one has yet shown definitively that elimination of certain foods works for all. Many people feel that eliminating certain foods has helped their arthritis but my experience is that most people rarely eliminate foods for life.
Central obesity (belly fat) is associated with an increase in inflammatory molecules that circulate in the body and there are some studies suggesting that osteoarthritis may be affected by this. Generally, I recommend my patients follow a well-balanced, portion-control diet of nourishing food, including a diversity of vegetables and fruits. Aiming to get your weight such that your BMI is at least under 30 and best between 20 and 25 is likely to benefit all forms of arthritis. Having said all this, many studies are still needed to answer your question. If you have questions about how to improve your diet to help your arthritis I recommend discussing this with your doctor and perhaps consulting a nutritionist.
Q. 1. Don’t smoke, 2. Good oral health, treat periodontal disease aggressively if present, 3. Plant-based, no-oil diet, 4. Work to maintain lean body mass index, 5. Exercise regularly, 6. Consider yoga or meditation— Charles, Michigan
A. Charles, thank you for reiterating good-sense recommendations. I would caution somewhat against “no-oil.” There are good oils (flax, walnut, oils high in omega-3 fatty acids) that we need in our diet. Also, many important nutrients in our diet need oil to better absorb them.
Q. Are there any benefits to R.A. from a paleo or an anti-inflammation diet? If so, do diet changes actually stop R.A.'s destruction of the joints, or merely reduce the symptoms? — langate, New York
So far no one has shown any one diet (vegan, vegetarian, Mediterranean, Paleolithic) stops joint destruction and studies (where it is very hard to control for a placebo response or use a control group) show only small effects from diet. The paleolithic diet has not been studied at all in R.A. This diet proposes that humans should go back to a diet closer to that of their original ancestors (from the Paleolithic era) where foods would not contain refined salt, sugar or processed oils, not include legumes, grains and dairy products, which are relatively recently introduced foods and focus more on foods more commonly available hundreds of years ago like fish, grass-fed pasture-raised meats, eggs, vegetables, fruit, fungi, roots and nuts. As you can see the answer on the “right” diet is still out, with many theories outstanding as to what is best for R.A.
Next week: Dr. Bykerk addresses the question of alternative remedies and diagnostic problems.
Previous Ask an Expert columns can be found here.
Booming: Living Through the Middle Ages offers news and commentary about baby boomers, anchored by Michael Winerip.
Sign up for our weekly newsletter here. You may also follow Booming via RSS here or visit nytimes.com/booming. You can reach us by e-mail at ***@****.