When does it stop?

[dm0329]

When do the weekly Avonex injections stop? Are DMDs for life?

I've been self-injecting Avonex for 16 years (dx 20 years ago; no DMDs back then; Betaseron lottery only). I saw my neuro today (f/u MRI will be on Monday) but I asked if Avonex usage is for life? He said well until the sixties.

I suppose I know that MS progresses and nothing stops progression. Avonex does have some neuro-protection properties, but I guess I have 18 years to keep poking (will turn age 65 in 18 years). Praying that my MRIs continue to be stable, my exams display little progression, and my bloodwork remains good.

But, when does it end? What have you been told? Tell me something I don't know. . .

[Justsayyes]

Wow, 16 years! I can relate somewhat, I've injected Avonex 10 years. I never thought back then that I'd still be with Avonex this long, but it works well for me and I am pretty stable. When does it end? When it isn't working for you any longer, or you decide to try something else.

I think the way MS is treated is going through changes that surely will tempt us to change. So far I'm not there yet, but it is nice to know there are more options now than ever. BG12 sounded exciting, but I have a cancer history now and have to be cautious if there is any indication of affecting that.

I recall the advice I was given when choosing treatment, pick a treatment you could stick with for the long haul. LOL, we sure did that didn't we?!

[BigA]

I'm just 4 years in and swore I'd quit at 5. I've been doing diet (Overcoming Multiple Sclerosis), exercise (5x weekly with yoga( and Avonex. At my last clean MRI, everyone asked me if I would give up the diet (No meat, no dairy, seafood OK, and PS Meat=Animal's Body, even chickens). Anyway, I said whatever I'm doing is working. That goes for Avonex as much as diet. I'm not sure what I'll be doing in 10 years, but in a why I hope I'm still on Avonex, because it means I'll be alright.

I'm not sure what to say. I guess we're in it for life unless things go bad, so I think you have to continue unless you are clear about what the odds might be and try them.

Good Luck

[RoyalOne]

For me its for life


I started Avonex one month after it came to market (June 96) and have remained stable with no attacks. I haven't had any side effects from it for many years. Was told a long time ago that its for life.
That's really OK with me as giving myself weekly injections has become little more than a minor inconvenience. If I had bothersome side effects from Avonex that would be a different story. For me the minor inconvenience in self-injecting is worth staying on it. Reasons for stopping it would be if I suddenly developed bad side effects or it stops working. Both unlikely scenarios at this point. The bottom line is,
I expect to be on it for life.

[BigA]

@ DM0329 - I thought of you this Saturday when I took my shot. Such a drag and then when I feel worried, I'm glad I'm on meds. If we're lucky, it's for life... I guess

[dm0329]

Thanks to everyone for chiming in. . .and making me smile!

I guess I know it's for life (or mid-sixties according to my neuro) but I wanted to hear from my fellow folks on Avonex. My follow up MRI was stable (no changes just the tons of old damage). As my neuro says you'd never know how bad your scan is by looking at you. . .sheesh! Really, doc?

As I age and continue to feel my MS sx daily, I sometimes need the reassurance that I've done my part with 16+ years on Avonex. And, yes, I'm glad it's just a once a week poke!

Again, thanks!