I never thought that I’d reach this crossroad in my life. At least not after years of preaching to others how important it is to stay on one of the disease modifying meds for MS. After all, I was one of the fortunate ones that was diagnosed in 2001 just after many of these drugs had become available. I didn’t have to just sit by and wait for my MS to progress. I had the power to take control.
Okay then, after over 10 years of choosing to subject my body to a weekly injection of Avonex, an interferon with side effects, I was fortunate enough to get away with minimum side effects and very little disease progression. However, I’ve now reached my mid MS crisis, as I like to call it. My body has suddenly begun to react with the dreaded flu-like symptoms – big time. I tried switching to Tysabri, the monthly IV infusion that has worked well for many others, only resulting in a disaster for me. I wound up with severe joint pain that side lined me for months.
So, my dilemma is what to do now. None of us with multiple sclerosis really know if any of these disease modifying drugs are really working for us other than the lucky few that actually improve while using them. All we have to go by is the statistical evidence, but I’m not a statistic – never have been. My body has always marched to the beat of a different drummer.
When the side effects of the medication become worse than the symptoms of the chronic illness, do we continue the meds because statistically others have benefitted, or do we listen to our own bodies and go off the offending medications. It’s much like playing Russian roulette. I’m not in favor of gambling with my life, but I’m also not very happy with such a lack in the quality of my life due to drugs that I’m not even sure are doing me any good at all. Perhaps my MS would have progressed at the same rate without these drugs in my system. I’m afraid that there’s only one way to find out. What do you think?