Hi, I'm a new poster to this board. Have had RRMS for a long time, its been fairly mild but even with LDN I've had a relapse, first in 4 yrs, but still a relapse. Thinking hard about Copaxone, possibly in addition to LDN. But does Copaxone really work, that is the question.

I am researching this, trying to form an opinion. Teva of course has lots of press releases touting studies which appear to show efficacy of C, but other resources I've consulted aren't so sure.

For example the Cochrane Review did a scathing article in 2004 about efficacy of the ABC's generally, and concluded C's efficacy was the lowest of them all, and in fact so low that it wasn't even recommended for routine use in the article's conclusion.

I guess another thing I wonder about is Teva's recent release of "26 years" of safety and efficacy data. Riddle me this, if the drug has only been on market since 1996 or so (~11 years) and yet Teva has some "26 years" of data on it, why did it take so long to get C to an FDA approved status and on-market???

I gather that there is some fairly interesting story behind the development of C. It is NOT an interferon, it was serendipitiously discovered when a combination of amino acids that were thought might INDUCE EAE in mice actually had the opposite effect on the mice's myelin.

My neuro keeps trying to push me this way, he has indicated its the least "harsh" of the ABCR choices in terms of side effects, and that "it seems to work well for milder forms of MS" at least in his practice, which is what I have.

I've heard different rumblings of whether or not C actually works, and want to get the collective wisdom of the group, many of whom (I assume) have actually taken copaxone at one time or another.

Appreciate any thoughts, again, I am aware of the fact that C hasn't been shown to help progressive MS, only RRMS. I'm just asking "for RRMS, do we really think this stuff works"?

Hiya Dizzy! You'd best go introduce yourself before AMN gets after you!

Nice to see you over here! Welcome to NT!

Dizzy,

During the first trials of Copaxone, the drug did not obtain stats that were sufficient to get it FDA approval. Supposedly they did more trials and "dredged" the stats to get them close enough to obtain the blessing of the FDA.

Perhaps this is one reason the Cochrane Group (independent from any drug company control) gave Copaxone such a lousy review.

I suppose some people "may" benefit from it but with all these MS drugs, you really don't know until you try them...and even then the docs aren't totally sure that they do very much for MS patients.

Harry

Dizzy
I was dx with RRMS in '97 I tried C w/Imuran for 2yrs after 5 years with no CRAB. Stopped C cuz of body dents, stayed on Imuran with no relapses with or without C.
Only after being off all meds for 2 years after stopping Imuran, I had 4 relapses in 2006. So I'm back on Imuran with residual sx so far this year.
My advice is listen to doc, but follow your instincts because you know your body best. Info is your friend.
All the best as you make your decision and afterwards.
Beth

Hey, Diz! Glad you made it! Don't listen to Flygirl, her head's in the clouds.

I'm on the edge of becoming a nay-sayer on the Copaxone. I had to go off interferons and switched to C six years ago. I haven't had any major attacks, which, is the great claim. But, it seems like ever since I started it, I've gone downhill at a steady and increasing pace.

The maddening part is, we have no way of knowing whether it helped, did nothing, hurt... we just don't know. For all I know, I'd be much worse off if I had not taken it.

My hope is that you'll try at least what your neuro recommends and remember that it's not permanent. If, after an agreed period, you and your neuro feel there is something better, you most certainly have the ability to change treatments.

http://brain.hastypastry.net/forums/...ad.php?t=15117

This one may be of interest too:
http://brain.hastypastry.net/forums/...ad.php?t=15236

I did very poorly on Copaxone. I was in the 1% club that had all the nice little side effects that don't get played up. I went off the drug and felt so much better afterwards.

They are mentioned in the very extensive prescribing information that you can read online. I have talked to the Teva rep about it as well as my neuro. I just happened to be one of those people in the 1% category. Whenever any doc says, it only happens to a small percentage of the population, my ears perk up b/c that is always me!

Asking questions never hurts, it may save your life! I know it has mine a couple of times.

I wonder if the information about efficacy is there if one would ask?

I've heard varying stats, but the one that comes up most often is 28% efficacy rate. I believe that was compared to placebo in trial. I could find the stats but I am in a hotel somewhere in Mass and I am leaving for a wedding. I will go through my files and get back to ya with links if you like.

(PS...HI everybody!!! Remember the pics y'all were looking for on the other board??? I finally posted them late night at work a day or so ago...there's a steroid victim on there!!! And the new ensign!! ...it's ALL about me yanno!!! :P )

Excuses excuses, always an excuse!

RW, I'm always suspicious of published stats that are meant to promote a product. What is missing is an independent follow-up study that charts the past 10 years. I want the truth!