DMDs - Disease Modifying Drugs

All these new drugs we now have for MS - Avonex, Betaseron, Copaxone, Rebif, Novantrone, Tysabri - the list goes on. Not one of them promises to make us feel better. As a matterof fact, many of them tell us to expect to feel worse (with flu-like symptoms)! But still we endure the injections, IM or SubQ, weekly, several times a week, or daily, or the monthly infusions which offer even graver possible side effects, some of which can kill you.

Still, most of us take one, either out of hope that it will slow our pregression as promised, or out of fear that if we do nothing we are surely screwed.

I held off for several years because I was doing well, and because I was on Medicare. I simply couldn't afford any of them. Also, I wasn't charmed by the meager benefit I felt they promised. Basically, they help one third of the people who take them slow their MS by about one third (of projected outcome). That sounds like a crap shoot to me. Still, I signed on.

I was prescribed Avonex first. I went on it for a year, then my insurance stopped covering it, so I went off for the next year, then it started covering it again, so I went back on it for another year. Guess what happened to me? Though I never had any side effects at all, my relapse rate went from about one every three years to three in one year! With residual loss of function. After sixteen years of being free of needing even a crutch, I became once again dependant on one. [For the sake of full disclosure, I now use one crutch in my house and a walker with a seat out in public; and a w/c for distances.]

So, now I refer to these DMDs as Drugs of Mass Destruction.

Still, out of both hope and fear I give myself an injection every day of Copaxone. Some shots leave a bruise, others a lump, and they all leave a sore spot which lasts for anywhere from 20 minutes to ten days! For me, the shots on the thighs are the worst. The ones on my belly or "muffin top" (heh) are the easiest.

I am back to having just one relapse every year or 18 months, and with IVSM, I recover from them completely. May my luck with that hold out, because my relapses affect my ability to walk the most. While I don't fear once again being wheelchair dependant as I was during my first 2 1/2 years with MS, I do fear the inaccessibility of my house. My bathroom door is only 19" wide! Hell, I can't even get my walker through it without folding it up a bit.

Because of that alone, I will continue taking my shots, and hope for the best. The worst is too painful to contemplate.