Decisions, decisions, decisions

[Auctioneer]

I've been on Copaxone and so far this year I have had five exacerbation's, two on the left side of my brain and three on the right side. My neurologist has decided that Copaxone may not be my best friend and is starting me on Rebif. She wanted me to take a few days off with no shots and clear the Copaxone out of my system before starting Rebif. Now comes the problem. A couple of days after I stopped taking Copaxone I started to feel pretty good and every day has been even better. I still have issues with my left arm, hand and legs, but I feel really good. I haven't felt this good for a very long time and I'm really thinking about going drug free. Probably not a good decision, but I just haven't felt this good for a long time. Any thoughts would be appreciated.

[Thinkimjob]

Not, alas, a doctor, so don't listen to a word I say - it's purely anecdotal.( Copaxone may not be your friend, and five flares in a year sounds a few too many to me, but one of the other dmds might be better.)
I've had the same experience with Betaseron. Felt soooo much better off it.
The trouble is, these drugs aren't meant to make you feel better. They're meant to help with the stuff you can't feel.
But they are meant to reduce the number of flares by about a third. D'you think you would have had 15 flares if you'd not been on Copaxone? Who knows.

I take Copaxone, but mainly because I'm scared of Tysabri.

[Jules A]

Not, alas, a doctor, so don't listen to a word I say - it's purely anecdotal.( Copaxone may not be your friend, and five flares in a year sounds a few too many to me, but one of the other dmds might be better.)

The trouble is, these drugs aren't meant to make you feel better. They're meant to help with the stuff you can't feel.
But they are meant to reduce the number of flares by about a third. D'you think you would have had 15 flares if you'd not been on Copaxone? Who knows.

I agree and would try another medication. Either way I hope that you continue feeling good.

BTW are you actually an auctioneer? I have always thought that would be a very cool job.

[Auctioneer]

Thinkimjob, thanks for the reply. I didn't really think about five flares verses 15 flares. Very good point. Thank you

Jules A, thank you for replying and yes, I have been an auctioneer for almost 29 years and it is a very cool job. It is a little weird, I have a significant amount of pain associated with my MS, but when I'm on stage selling, all or almost all of my pain goes away. Which is why I tell my neurologist that all of this MS stuff is just in my head. :-)

BTW, my daughter is an auctioneer too and that's really cool.

[deb46]

I had the same thing happen with Avonex. I was on it for a couple of years. I felt really awful and decided to stop for a while. I felt soooo much better. I actually felt like I might live again. Stayed of meds for about 4 years now neuro says need to go back on because of new symptoms.

[4boysmom]

I've been tempted to go off also. I think I'd feel much better. But alas, I don't want to be sorry someday, so I stay on stuff.