A question for long-time Copax users

[Mable]

I've been on Copaxone for a couple years now, and everything is going just fine. But I have a question for those of you who have been using it longer.

Have any of you used Copaxone and had your relapses and lesions stop? Further, have you stopped having disease progression? Or do we decline over time no matter what?

[Jules A]

Well I do think people with MS which is a chronic, progressive disease, do progress.

However I have been on Copaxone almost 10 years and my MRIs are considered "stable", that said I had numerous lesions so they aren't really countable.

I have not had a flare in the time since I have been on Copaxone, and had 2 in the six months before being diagnosed and starting it.

I do have some noted progression, mostly annoying things, and am still blessed to be able to continue working an average of 50 hours a week.

Overall I'm not sure if the Copaxone is working or my MS just has been slow going so far in either case there is no way I'd consider stopping it unless a total slam dunk medication comes along and has stood the test of time OR my MS starts a serious progression.

[Cat Mom]

After 2 years of Rebif and countless flares, been on Copaxone since 2007. The last time I had a steroid-worthy flare was Jan 2009. MRI's were "stable" until my last one in Sept 2013. "A few" new lesions showed up but they totally snuck in, I didn't have a flare and absolutely no changes in how I'm feeling.

I'm 49 next month (ahhhh when did THAT happen) and MS is the only thing wrong with me! No other meds but Copaxone, Elavil and once in a blue moon, Baclofen.

Of course it's near impossible to know if it's working because God only knows what shape I'd be in without it. I hope it keeps working for you!

Jen

[DianeD]

Last MRI

I've been on Copaxone for a couple years now, and everything is going just fine. But I have a question for those of you who have been using it longer.

Have any of you used Copaxone and had your relapses and lesions stop? Further, have you stopped having disease progression? Or do we decline over time no matter what?

I didn't see any improvement in my lesion load last MRI (last year); I don't feel better, sad to say. I don't think the C is making much difference. Thing is how do you really tell.

If you start out using a DMD right after being diagnosed and you didn't have any active lesions, how do you know that you might never have had active lesions? I've read a lot about this, but I can't find any real evidence that you improve on a DMD. Of course that's not the promise they make. The DMD is just supposed to keep you from getting more lesions and sometimes it works on active lesions.

I guess you just have to go on faith with DMD's. I can think of so many arguments with regard to using them. I wish I hadn't started. It's depressing to think of having to inject for the rest of my life.

I hope they come up with something better and soon.

Diane

[Mable]

Thanks for the replies. I've since found what I was looking for, a study that showed many Copaxone users with no disease activity (no relapses, no new or enhancing lesions) still have excessive brain atrophy over time.

Diane, you are not going to have to take shots the rest of your life. They already have come up with lots of treatments that are better. Personally, I think I'll stay on the Copaxone, hope my brain isn't one of the ones shrinking excessively, and campaign hard for Lemtrada once it becomes legal in the US.