Here is My Question:
I was diagnosed with MS 14 years ago. I have taken disease modifying drugs but after a bad experience 5 years ago I have not been on any MS medications and instead eat healthy (nothing processed, just lean meat, fruits, veggies...) and exercise about 5 times a week, including weight lifting and cardio. This appears to be as good as the results of a MS modifying drug. So why should I go back on medicine?
This is a great question. People with MS take Disease modifying therapies (DMTs) to reduce their risk of relapses and their risk of the disease spreading throughout the central nervous system as detected by standard MR imaging. Reducing these risks has resulted in modest short term reductions in the risk of residual neurological abnormalities on examination after 2 years of therapy. It is hoped but difficult to prove that these short term (2 year) benefits of DMT result in less disability after many years of treatment (perhaps more than 10 years of treatment).
Does this mean that DMTs are meant for everyone? The answer is no or at least, we don’t know for sure. First, clinical trials include only patients meeting certain entry criteria. These clinical trial participants tend to be younger, earlier in the course of the disease and have less disability than most patients seen in MS clinics. They also have fewer medical problems that can interfere with treatment.
For instance, the average duration of disease in most MS clinical trials is between 5 and 7 years and the average patient has a minimal or no disability (all clinical trials actually exclude patients unable to walk at least the length of a football field). You report having MS for 14 years which already places you in a outlier group. Other information is not provided. So whether you should or should not be on disease modifying therapy depends on your circumstances and disease characteristics.
Now here is a very important point for you to consider: while it is good that you have remained stable for 5 years off of disease modifying therapy this doesn’t mean much in the context of a disease that often takes 30-40 years to create problems for people. Patients often remain stable for intervals of 2-5 years and eventually develop problems from their MS. The real question should be, “what are my risk factors for disease progression and has there been any evidence of recurrent disease during my 5 years off of therapy?” Only a MS specialist with more information would be able to answer these questions for you. Remember the disease can be very active without any changes in your symptoms, at least for several years. If you haven’t checked in with an MS specialist in several years, I would recommend considering this in the future.
By the way the things you are doing for your MS (diet, exercise and life style adjustments) are great and are likely responsible for you feeling as good as you do; keep it up and don’t let anyone tell your otherwise. But stating that the results of these activities are as good as taking DMTs is a false comparison and implies that one is a substitution for the other. Both are usually required for most patients to achieve long term beneficial outcomes.
Rip Kinkel, MD
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