dealin83 said...
Hi all,
Hope everyone is doing well. I have a question and it will probably sound stupid, but...I was diagnosed in dec. so i don't have all the knowledge i could have about the disease. My question is about the avonex that i am taking. What would happen to me if i didn't take it? My dr never really gave me a straight answer he basically made it seem like i had no choice but to be on it. I'm kinda confused as to what it really does. You can still have flairs while using it, It doesn't stop that, so what does it really do? does everyone who has MS have to take those injection therapies? Im sorry if i sound silly i am just trying to understand it. Gonna do some more research on the web but if anyone has any advice or answers i would so appreciate it.
Thanks a bunch,
Lindsay
Not a stupid question. Many medications give the patient a promise of something like, "Take these pills (or inject this medication) until the end of the prescript
ion, and the disease will be gone." Or in some cases, (like insulin, for diabetics), "inject this medicine or you could die."
In our case -- none of the disease-modifying drugs promises cure, nor if you should stop taking them (or not take them at all) will it mean you will die.
It COULD mean, however, that you have significant flares (or exacerbations), and deal with significant disability. Or not. There are no promises either way. I was diagnosed more than 25 years ago, long before any of these drugs were discovered. I suffered 2-3 exacerbations (or flares) a year, prior to starting on Betaseron. Since starting on B about 15 years ago, I've had just ONE flare. My experience may -- or may not -- be similar to yours..but it works for me. Fewer flares mean lesser disability. In my case, no real change for the last 15 years, which is a GOOD thing.
So yes, you could decide to NOT inject it. And maybe you'll do OK. Or maybe not. As Rhonda said, MS has a way of continuing to do damage in your nervous system, sometimes evident, sometimes not. There have been people who have died and had an autopsy done, to discover they had MS for years, undetected and undiagnosed, and had no outward symptoms. Or there are people like me who have MS and are dealing with significant disability. It's a crap shoot. You play...and pay...at your peril. But if you choose to NOT take it, all it will mean is that you're greatly increasing your risk of future disability.