After some long hours of deep thinking and discussion, Caryn and I ? along with the guidance of my MS medical team, of course ? have come to a decision as to what to do next as to disease modifying medication for my multiple sclerosis. This is not a decision that we made lightly nor is it the path for everyone. I wanted to take some time to discuss my choice; not to influence anyone?s choice of med but rather to illuminate the process we went through to come to the decisions we made.
Before I get into what we decided, I figured a recap of where I?ve been might be in order.
When I was diagnosed with MS in April of 2001, there were only three drugs on the market; Avonex, Betaseron & Copaxone ? the famed ?ABC? drugs. My diagnosing neurologist recommended that I see a leading specialist in the field of MS treatment and research to help me make up my mind as to which med to begin. I?m pretty sure that I didn?t make an effort to look into the therapies before that next appointment (some 3 months later), as I wasn?t aware of how intricate the decision was to be?
I had, however, done a lot (a LOT-a lot) of research into the disease. When I met with this new doc (and an MS Fellow who was training under him), I asked loads of questions and spoke with language obtained in years of study and practice of science (albeit food science; the lingo isn?t really different). Acknowledging my understanding of biology and the body, we discussed the way in which each of the drugs was thought to work. I was sent away with a massively thick binder of information to digest and make my decision.
About two weeks later, I got in touch and told him of my decision to go with Betaseron. Arrangements were made for a nurse to come by and teach me how to mix my shots (yes, these were the days before pre-mixed medication, pre-filled syringes, and even before the auto-injection aids now available), how to inject myself, and how to care for both site and whole body after the every-other-evening ritual.
I spent a little longer tittering my dose up, as I had read the stories of side-effects and wanted to give my body as long to adapt as I could. I think it was just over a month before I was using a full dose.
In the ensuing 18 months, I experienced six relapses and was put on six different 3-day courses of steroids . I was 100% compliant with my shot schedule - never in that year and a half missing a single dose.
Still, my disease progressed.
My doc and I decided that, since my MS was getting aggressive, that it was time for us to get aggressive. Though there had been the addition of Rebif to the list of FDA approved MS meds, the only ?big gun? available to us was Novantrone, a chemotherapy agent approved for use in the US for ?breakthrough? disease &mdash meaning MS that wasn?t responding to the (now) ?ABCR? drugs.
We made the call to begin a 60-day ?wash-out? from Betaseron in order to prep for my new regiment of medication. Within a week of stopping treatment with the interferon med, I felt better than I had in nearly two years. I hadn?t realized the cloud of flu-like symptoms under which I had lived for so long. It wasn?t just me, my live-in girlfriend even noted that I seemed more ?alive? once I stopped taking my shots.
Thus ended the first phase of MS medications for me.
I had intended to make this a 2-part blog, but I now see that it will have to be split into thirds?
Please feel free to share your initial decision and experience choosing your therapy. We all learn from one another here at the Life With MS Blog!
Wishing you and your family the best of health.
Cheers,
Trevis
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