Here’s an update on what’s happening in my world, in terms of MS drugs.
I began Avonex very shortly after I was diagnosed, just about two years ago. I rocked it for awhile, about fifteen months, and seemed to do fine with the mild side effects. Eventually however, the IM shots became too much of a bitch for me to do. Luckily I had a friend who was recently certified in all things shots, and she was thrilled to come over once a week and stab me in the leg. That was awesome. However, after two mild bouts of ON, and a continuing progression of muscle spasms, I said “fuck it” and gave up on the drug. I honestly didn’t feel like it was offering me the protection from relapses. Do I regret it at this point in time? Yep, I do.
I went into this whole deal knowing that there is obviously no guarantee that any of the CRAB drugs are going to help you stay out of relapse, however there is also the chance that having stayed on the Avonex up until this point would have kept some of the progression of symptoms even just a little more mild. It’s certainly all a crapshoot, but it’s the best we’ve got. Even though I would have eventually moved onto something other then interferons, I’ve now been drug free for about six months or so, and I regret that it might have been a stupid move on my part.
An MRI a few months ago showed a nice new load of lesions. I did a round of IVSM which didn’t really seem to do much in terms of the new myoclonic spasms I was, and still am experiencing. At this point in the game my doctor has suggested that interferons aren’t my best bet, go figure. Tysabri is the word. Two years ago after reading about PML associated with Tysabri, I would have said you couldn’t pay me to ever go this route. Today however, I am singing a different tune. While the fact that most PML cases have occurred in Europe, have generally been after hitting the two year mark in treatment, and has been linked to a patients previous use of chemotherapy drugs, I’m a little less weary. It’s also been pretty comforting to hear from those of you, and to read about many who are taking on Tysabri with positive results. Two months later however, I’m still caught in the midst of insurance playing games, from denying it, to rejecting an appeal letter for various technicalities. Let’s just say they’re taking their time. There will always be the patient assistance route, which I’ll definitely take advantage of if I can. I can’t really do this however, until my insurance company takes it’s collective head out of it’s very large ass, and simply denies me altogether.
So how about Copaxone? I’m not sure why this wasn’t discussed as an option the last time I met with my doctor. It isn’t an interferon, and it also doesn’t come with the risk of severe disability or death. Let’s be honest here, this is a major plus. During Jackie’s recent stay, and watching her do her injections, I honestly feel like this is an option I want to bring to the table during my visit with the doctor next week. So as I wait for Tysabri to become a reality, perhaps it will just fade away as a distant memory of what could have been, and I’ll just be Copaxone twinsies with Jackie. Hopefully I’ll know more next week after my appointment. I am definitely ready to rev up the disease modifying engine once again.
