Here is My Question:
I'm 37 yrs old and I had my first MS "attack" in 2001 after the birth of my first child. Then was officially diagnosed in 2004 after my second child. I've had only a few relapses since the start, all following the birth of my children. In 2009 I tried Copaxone with bad side effects, then in 2010 tried Avonex with the same results. Neither lasted more than a month. That was the only time I used any MS treatment. Although I haven't had many relapses, I now have horrible anxiety and mood swings and the fatigue has become unpredictable and debilitating and I'm now on SSDI. I recently got the results of my last MRI and there has been no activity since the MRI I had 4 years ago, and that one was inactive from the year before with one lesion having shrunk. So at least 5 years of inactivity. Great news, just too bad we can't reverse the damage. My question is, how likely is it to remain inactive forever?
Thankfully your disease course appears to be more mild than some; although you are suffering from the typical symptoms (fatigue). The question you are asking is a difficult one to answer in most circumstances because we have limited data on discontinuing therapy. Although your course has been more mild, your age suggests that you are still very much at risk for further inflammatory events, and I have previously blogged on this site about the purpose of the disease modifying therapies in this context (http://www.healthcarejourney.com/physician-blog/a-commonly-asked-question-about-disease-modifying-therapies-for-multiple-sclerosis).
I would add that we as MS specialists are interested in learning more about prognostic factors (ie, characteristics about patients who do better coming off DMT versus those who don't) about DMT discontinuation so we can give patients real numbers to the question, "doc, what are the chances if I stop my therapy that I will have another attack (or get worse)". There is some published data from single MS centers, but they tend to recommend considering coming off if you have shown no disease activity (ie, no new attacks/relapses, no worsening of function, and no new changes on the MRI scan) over 5+ years. They also tend to suggest that patients be at least 45 years of age or older to consider this. The age point I think is important because the older we get, the "weaker" the immune system becomes. As the immune system weakens, it is less likely to cause new inflammation in the nervous system (and that is what is targeted by the DMTs). My personal feeling is that 45 years likely is too young to broadly consider coming off DMT as well (in my experience).
My colleagues at the University of Colorado are starting a study to help determine some of those prognostic factors, but their criteria for study entry is an age of 55 or older. You can read more about this at https://clinicaltrials.gov/ct2/show/NCT03073603?term=MS+AND+discontinuation&rank=1
Hopefully we will have some good data to share on this subject in the next year or two.
A. Scott Nielsen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente
KP Fontana and Riverside Medical Centers
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