Sally, I've had SPMS since I was diagnosed, back in 1980, except that back then I don't think they had classified MS--you had MS or you didn't.
I took Avonex for 3 years anyway, and now I've taken Copaxone for almost 3 years. What I don't get is why the two neuros thought it was advisable for me to be on one of the ABCRs.
I have two possible answers:
1 - Neither of them was aware that I had SPMS. This is possible because neither of them ever got into the topic.
2 - They both believe that everyone with MS--no matter what type of MS--ought to be on one of these drugs. I still don't get why they didn't say, "The evidence isn't there to show that this ABCR drug will help someone who's had MS as long as you have, someone your age, or someone with SPMS, but go ahead anyway if you'd like to give it a try."
They apparently believe wholeheartedly in these drugs, and if they don't, there's also the fact that the ABCR drugs are pretty much all they have to offer, after so many decades of being able to offer nothing at all except steroids.
I can imagine that a neuro might be reluctant to tell someone like me (older, SPMS for more than 20 years), "I'd like to suggest one of the ABCR drugs but they're not shown to work for people like yourself, and so I won't do that."
In other words, they don't want to turn us away, offering us nothing but a lifetime with MS.
I've often heard that neuros are very frustrated by a disease like MS because they've been trained, as doctors, to want to help people. When they can't do anything to help, they get angry.
This may even account for some of the dismissive attitudes some neuros have, which I've seen discussed on this board often enough.
So I don't blame either neuro for offering me useless drugs. I'm glad I was given a chance to try them--on the offchance that they might have helped.
You were smarter, Sally. You've saved yourself a lot of time and effort. Sure, doing a shot a day is a piece of cake once you learn a routine for it, but 15 minutes a day comes out to over 2 hours a week.
I can do a lot with 2 hours a week. If someone says the shot can be done in less than 15 minutes, I'm factoring in the time spent arranging for and waiting for the Copaxone deliveries, getting on the phone about insurance coverage, and unwrapping the package and storing and keeping track of the syringes and other supplies (cotton balls, Benadryl, gelpacks). It all adds up.
I'm really enjoying all of the freedom I suddenly have.
MS diagnosed 1980.
Avonex 2002-2005. Copaxone 6/4/07-5/15/10.