so next week Tuesday is the appt. with my neuro. I will have to decide whether i want to stay on Tysabri or not. As i said before, the one thing i know for sure is that i cannot go back to injecting myself so the only other option i’ll consider is the new oral drug, Gilenya. If i’m to be truly honest here, have i given a whole lot of thought to what i’m going to do? no! i really still am not sure…
- Fear of the unknown is something that i’ve struggled with in the past and i think that this is a classic example. Gilenya was approved in the early part of this year (or late last year). I feel as if it hasn’t been on the market long enuf for “them” to really really have a grasp on how it could affect the masses – 2 years from now, “they” will discover that it actually causes patients to grow an extra limb!
- Let’s not lose sight of the fact that this is an oral drug tho! WOOHOO!!!
- Tysabri is supposedly the most aggressive drug on the market and does GREAT things for patients. Has it done GREAT things for me? no, not really, altho it is working because there’s been no disease progression, so it’s done “GOOD” things for me, but i wouldn’t say “GREAT”
- We’ve finally found a vein that doesn’t mind being stuck and giving up the blood, so the procedure is not as dreadful as it used to be
- let’s not lose sight of that higher risk of brain infection tho. Great! just friggin great!
Decisions…decisions. what to do, what to do? I cyah lie, i think i kinda want to stay on Tysabri but…
MS is one decision after another. I started Gilenya Tuesday. Still too soon for any real feed back.
Stace, this is no easy decision to make as you've clearly highlighted.
I can only say that I do hope, whichever option you choose is the one that brings you improved results.
Stay strong beautiful XX
Oh, gee, what a decision to have to make. Good luck.