The Appointment
Tomorrow I sit down with the neurologist to discuss treatment options. A couple of days ago, he called me to get me to start thinking about Avonex vs. Tysabri. I’m taking vacation this week (not illness-related, I just needed a break and some family time), and this afternoon was my chance to sit down with the computer and do some reading and soul-searching. Let’s play Damned If I Do, Damned If I Don’t.
On the one hand, there’s Avonex. This is my known. I know that there will be hell over the next couple of months as my body adjusts. There will be the weekly disgust as I jam a way-too-big needle into my own body. I never got used to that. I won’t ever get used to that. I picture myself in chills on the couch as my 2-year-old tugs on my finger, crying because I can’t get off the couch to play with him.
I hate that picture.
The other hand is Tysabri. The unknown, the next great hope. Well, that is, if it doesn’t kill you. All I have to do is exchange one morning a month to fill out boatloads of paperwork, hook up to an IV drip, and hope that I don’t get a potentially fatal virus. Still, the benefits of the drug are huge – there’s so much potential for this to provide a radical change for the better for so many people.
Just not me. Yet.
After wavering back and forth as I read through all of the National MS Society stuff about the two options and the Biogen sites, I just kept going back to Avonex as the right choice for me at this point in my life. At 39, I’m still young, so I need to make a decision for the long term. There’s long-term use information on Avonex, while obviously there isn’t any for Tysabri. If I were declining rapidly, if I were having attack after attack after attack, if my ability to function was being radically affected, then Tysabri would definitely be worth the risk. But my situation isn’t dire enough to take that risk at this point. It’s been 4 years since my last attack. Yes, I’ve had some minor symptoms, but for the most part, my life hasn’t been that adversely affected by the disorder. And a good portion of that time was without any medication, since I was either pregnant or breastfeeding for such a big chunk of that time.
My hubby wants to come with me tomorrow to the appointment. I think that’s a good idea. I’m so glad that he wants to be so active in my illness. I think it helps him too to be able to do something, instead of just sitting and watching. He’s a fixer.