Help! 21 years old and about to start Tysabri!
Posted: Wed Sep 02, 2009 7:43 pm
Hi,
Hopefully I can get some help here about my issues with tysabri ...
After being diagnosed at 16, I tried Rebif, but I couldn't handle that after just 8 months and Copaxone didn't work after 6 months either. Literally my only options are Tysbari or do nothing. I've been doing nothing for the past year and I haven't improved at all. In fact, I've progressed so far that my neuro told me "if you don't go on treatment soon you are risking serious, permanent and irreversible neurological damage". which makes me feel just oh so great.
I've been trying to wrap my head around going on tysabri. Yes, I know that it works wonders! But I also know about the serious (but low) risk of PML disease. After not being able to tolerate the previous 2 drugs because I showed the "rare" side effects (Rebif started messing with my liver, which wasn't good. And I experienced the immediate post-injection reaction with Copaxone, and I'm not allowed to go back on that), I'm scared that I'm going to get PML.
Basically, I was just wondering if anyone had an information for me. I was also wondering if anyone has just gone on tysbari for a short period of time (I'm thinking 1 year) and then returning to a normal, drug free life. Ideally, I would love to live a drug free healthy life and explore non-conventional methods of treatment (nutrition, acupuncture, etc).
Thanks for listening to my rant! Any comments would be extremely helpful.
Take care.
Hopefully I can get some help here about my issues with tysabri ...
After being diagnosed at 16, I tried Rebif, but I couldn't handle that after just 8 months and Copaxone didn't work after 6 months either. Literally my only options are Tysbari or do nothing. I've been doing nothing for the past year and I haven't improved at all. In fact, I've progressed so far that my neuro told me "if you don't go on treatment soon you are risking serious, permanent and irreversible neurological damage". which makes me feel just oh so great.
I've been trying to wrap my head around going on tysabri. Yes, I know that it works wonders! But I also know about the serious (but low) risk of PML disease. After not being able to tolerate the previous 2 drugs because I showed the "rare" side effects (Rebif started messing with my liver, which wasn't good. And I experienced the immediate post-injection reaction with Copaxone, and I'm not allowed to go back on that), I'm scared that I'm going to get PML.
Basically, I was just wondering if anyone had an information for me. I was also wondering if anyone has just gone on tysbari for a short period of time (I'm thinking 1 year) and then returning to a normal, drug free life. Ideally, I would love to live a drug free healthy life and explore non-conventional methods of treatment (nutrition, acupuncture, etc).
Thanks for listening to my rant! Any comments would be extremely helpful.
Take care.