After several months of soul searching and research, following my diagnosis of Multiple Sclerosis, I made the choice to wait to take any of the disease modifying drugs. It was not an easy decision to make. I am not opposed to taking the medication. I may take it in the future but right now I am choosing to wait based upon my individual set of circumstances.
Why would anyone make the decision to wait to take a drug which could potentially help?
I was asked this question by many people following my decision to wait. I will try to answer this in the best way I can, as pertinent to my unique situation.
At this point I need to clearly state that in no way am I advocating for anyone to make the choice I did. The decision to take the MS drugs or not is your decision alone and should be based upon a thorough examination of your unique circumstances and with input from your doctor. The point of this article, as well as a contributing article by Doctor Sethi, is to promote a discussion of how different people arrive at their decision to choose medication or not.
In my situation I was diagnosed in October of 2007 but I suspect that I have had my MS for some time but it may have been a rather benign case, as I had no symptoms (that I am aware of) following my first symptom of optic neuritis, for over ten years. Currently, although I have many MS symptoms which come and go, I have not had many acute exacerbations.
As difficult as it was to do, I wanted to make my decision based more upon logic and reason than out of fear. Of course when you hear that you have a disease such as Multiple Sclerosis you are going to feel some fear. There is a fear of the unknown and of the worst case scenarios. There might also be fear of taking medications which you must inject, may have serious side effects, and long term effects we may not know about at this time. I didn't want to either rush into taking medication or rush to reject the idea of meds based solely out of fear. I also had to trust my gut feelings about what is right for me at this time.
I told my neurologist that I would wait on the decision to take any of the disease modifying drugs but would re-visit the idea based on two criteria. If I were to have multiple exacerbations or if I were to experience symptoms which were severe then I would think about taking the drugs. I also wanted to wait to see what my next MRI revealed. During that first year I only had one exacerbation where I had to take Prednisone and my yearly MRI did not show any new lesions or changes in the size of my pre-existing lesions. I realize that I am fortunate. Had there been changes in my MRI I would have revisited the idea of taking the meds.
I must be perfectly honest here in that I also thought long and hard about the potential side effects (some of which include possible liver damage, flu like symptoms, depression, fatigue, nausea, increased heart rate, low red and white cell blood count, hair loss, joint pain, difficulty breathing, to name a few), the cost (most of these drugs cost more a month than my mortgage), and the fact that these drugs would not help me with the symptoms I already have but would hopefully lengthen the times between relapses if I was lucky.