Question

[scampergirl]

I have a medication question. I was on Copaxone for 3 years...failed. Next came Tysabri for 3 years...had an adverse reaction. On Avonex for 4 years now. I have had no flares for 7 years! I want to get off all DMD's. I saw my neuro yesterday and she would be okay with me getting off, but she has reservations.

I am looking for anybody's reaction, outcome, etc with getting off DMD's. She did think I could be SP but she said there is no way to test. Is it worth the risk?

Thanks for sharing your experiences.

[hunterd]

my thoughts are that if it aint broke don't fix it!

[dm0329]

To quote hunterd (and my neurologist), if it's not broken why fix it? I'd stick with the Avonex!

I've been self-injecting Avonex for 17 years (started 3 years after my dx as no DMDs back then). I am in my late 40's now, and I wanted to know if "Avonex was for life" at my last neuro appt. He said, "if it's not broken, why fix it" and to stay on Avonex until age 65!

Due to neuro-protective properties, he recommends staying on Avonex until age 65! Yeah. . .I wanted to stop the weekly pokes, too, but I'm afraid. Also, I don't want to start a new tx as I'd hate to get used to new side effects.

I've come to think of Avonex as " the silver lining in my dark cloud." Despite feeling fine, my multiple sclerosis was progressing silently but aggressively from age 25-28. It was the old "wait and see" approach. My MRI is simply horrible and "you'd never know I was doing so good" according to my neuro! Geez. . .thanks doc!

IMHO, Avonex stick with it (pun intended!).

[scampergirl]

Thanks for the thoughts on Avonex, I guess I should follow the golden rule, 'don't fix it if it's not broke'.

I'll eat the cost, Medicare is not a great deal for me!!