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MS has been a part of my life for 28 years. I have tried numerous medications - Copaxone, Gilenya, Tecfidera, Tysabri, Immuran, and, most recently, Plegridy. And had adverse reactions to each. Some more severe than others. I have RR MS, am still mobile and active but have noticed a little more progression of late with some symptoms. Is there a common denominator with MS drugs that may be the root of these reactions. I feel as if I am playing Russian Roulette not taking some medication, but feel the same way with each new nedication. Help! Thank you.
I hope that by the time you finish reading my response to your question, you will realize that "Russian Roulette" is a very bad analogy for your predicament.
While I do not know all the details of your case, I do know the natural history of MS and can provide a framework for your consideration.
If you are a typical MS patient with relapsing MS for 28 years, you should be a woman somewhere between the age of 50 and 65. I will also assume that you have few other physical or mental problems for the purposes of my comments ,since additional health concerns can significantly affect your functional status.
The median time from onset of MS (your first symptoms) to the development of secondary progressive MS is approximately 20 years in most modern natural history studies (Lyon France 1976-1997: British Columbia 1980-2003; and Lorraine France 1996-2003). This means that you are doing way better than the average MS patient if you have relapsing MS after 28 years. In the London Ontario natural history study, 80 % of patients with a relapsing onset were classified as progressive disease within 20 years of onset. Again this would indicate that you are doing very well indeed.
Since the point at which a person develops progressive disease is often unclear, we often look to these natural history studies to tell us when people with MS tend to reach certain disability milestones. A common milestone for this purpose is the point at which a person requires at least a cane to walk and never improves again to walking without at least a cane. Now many people use canes for safety and reassurance, but for the purposes of this definition we are literally talking about people who can not walk the length of a football field without a cane. All of these natural history studies indicate that the median time to requiring a cane for walking ranges from 23 to 30 years after onset of MS symptoms. By this definition you are also doing very well.
Now why is this information important to you in your decision about treatments? First, you already know you are doing considerably better that the average patient. You state you are still mobile and active. This indicates that your Expanded Disability Scale Score is probably no greater than 3.0. If this is the case you are doing better than at least 80 % of other people with MS and may never develop significant disability. If this is the case, you may never require disease modifying therapy.
Why then are your symptoms worsening? Without knowing the details, I can not answer this question, but it is quite possible (based on the information provided and discussed above) that your increase in symptoms is NOT related to disease progression. The increase in symptoms could be related to other conditions (mental and physical), medications, deconditioning or simply the combination of normal aging on top of a brain already affected by MS.
I suspect it is time to take a more holistic view of your overall condition and take a complementary approach to management that may or may not involve a disease modifying therapy. Discuss this with your MS specialist and feel free to share more of the details of your condition.
Revere Kinkel MD
Director of the UCSD Multiple Sclerosis Program