going off copaxone after 10 years

[leslie0321]

I have been on copaxone for 10 years. I have not been taking a shot every day for a few years. In the last year I was injecting 1-2 times per week. according to my neurologist, this is having no affect on my MS and if I don't take it every day as prescribed it is doing me no good. I can't help but think that I have a build up of medicine in my body after so many years. does anyone know if copaxone builds up in your body?

[MarkLavelle]

What I've heard here -- and from my own MS neuro -- is that it does take 6-9 months of Copaxone injections to build up enough in your system to really be effective.

When you skip several shots in a row, your system starts depleting whatever you have stored up. So after some unknown number of days you will start to fall below the effective level. I don't think anyone knows how many days (months?) it takes to lose effectiveness, but it will happen...

And finally, I'm pretty sure that part of the testing of Copaxone 40 3x/week was to have some patients on Copaxone 20 for only 3x/week (instead of the usual 7), and that the lower dose was found to be significantly less effective. That means the 'replacement rate' to maintain effectiveness must between 4 and 7 times per week, and your doctor is right about wasting the money...

[jreagan70]

In the last year I was injecting 1-2 times per week. according to my neurologist, this is having no affect on my MS and if I don't take it every day as prescribed it is doing me no good.

Once a week for a 7X-a-week med probably isn't giving you the most bang for your buck. But it apparently isn't true that you must inject every day or it's doing no good. There have been at least a couple of studies that showed that 20 mg Copaxone every other day is just as effective as every day. The one I can find right now was presented at the American Academy of Neurology conference in 2010:

Twice Weekly Versus Daily Glatiramer Acetate: Results of a Randomized, Rater-Blinded Prospective Clinical Trial Clinical and MRI Study in Relapsing-Remitting MS

Christina Caon, Jai Perumal, Alexandros Tselis, Wendy Ching, Fen Bao, Zahid Latif, Imad Zak, Omar Khan, Detroit, MI

OBJECTIVE: To investigate in a small pilot study the safety, tolerability, and efficacy of glatiramer acetate (GA) 20 mg injected subcutaneously (SC) twice a week versus GA administered 20 mg SC daily in RRMS.

BACKGROUND: The optimal dose of GA in RRMS remains unknown. We have previously shown that GA administered on alternate days appears to be as effective as daily GA. There is considerable interest in identifying the optimal dose of GA in RRMS.

DESIGN/METHODS: We conducted a prospective, randomized, rater-blinded 2 year study to compare GA 20 mg SC twice a week to GA 20 mg SC daily. RRMS patients receiving GA 20 mg SC daily for at least one year were randomized to either continue in the same fashion or switch to GA 20 mg SC twice weekly. EDSS were recorded every 6 months and to confirm relapses, while brain MRI scans were done at baseline and month 24.

RESULTS: 48 RRMS were randomized into equal groups of GA 20 mg SC daily or GA 20 mg SC twice-weekly. Both groups were well-matched. After two years, the annualized relapse rate, mean EDSS, proportion of relapse-free patients, and the proportion of patients without disease progression were similar in the two groups. Brain MRI also did not demonstrate any significant changes in T2W or T1W lesion, or in the percentage brain volume change. However, the incidence of lipoatrophy, local injection site reactions, and immediate-post injection systemic reactions were significantly lower in the GA twice-weekly group.

CONCLUSIONS/RELEVANCE: This study provides further evidence that GA administered less frequently than daily may be as efficacious and better tolerated than GA administered daily. This may have a significant impact in the clinical use of GA. Larger, multi-center studies are warranted to confirm our findings and investigate the optimal dose of GA in RRMS.

Sorry -- can't find the other study I'm thinking of. But this hardly supports that not injecting every day does no good. It makes me wonder whether your neuro is keeping up on the latest literature. It may be just as bad that he would lie to you to frighten you into compliance.

And there are a couple of other things I'd like to clear up.

What I've heard here -- and from my own MS neuro -- is that it does take 6-9 months of Copaxone injections to build up enough in your system to really be effective.

"Hearing" things can be very different than the facts. And what does "really effective" mean? The published data in the prescribing information show that 20 mg Copaxone was more effective than placebo in delaying the second relapse at about 3 months. Is better than placebo not "really effective"? The same data shows that effectiveness in delaying the second relapse was twice as high at about 900 days than at 270 days (9 months). Given that the effectiveness is twice as high at 900 days, is the 270-day mark "really effective"?

And where in the data -- or anywhere -- is it shown that the increasing effectiveness comes from "building up in the system" rather than the effects of a steady-state environment over time? That's something I'd like to see.

I'm pretty sure that part of the testing of Copaxone 40 3x/week was to have some patients on Copaxone 20 for only 3x/week (instead of the usual 7), and that the lower dose was found to be significantly less effective. That means the 'replacement rate' to maintain effectiveness must between 4 and 7 times per week, and your doctor is right about wasting the money...

"Pretty sure" doesn't stand up to the facts. The published data in the prescribing information show that, for 40 mg 3X/wk Copaxone, the relative risk reduction in the clinical trial at 12 months was about 34%. For 20 mg daily Copaxone at the 2-year mark (Study 2), the relative risk reduction is about 30%. That hardly qualifies as "significantly less effective." The two are about the same.

Teva didn't go to 40 mg Copaxone because it's more effective. The only reason was to have a medication that would be on patent when the 20 mg version went off. If the studies are correct, the 20 mg version might be just as effective taken 3X/wk, but it would be the kiss of death for Teva to admit that, and they couldn't patent it. So 40 mg every other day was the only logical choice.

It might be that 2X/wk could be just as effective as 7X/wk, but there's no reason for anyone to do that study now. So we can't know what the "replacement rate" is or at what point a person would be "wasting money" by not taking a certain number of injections. But there's certainly nothing in the medical literature to even come close to supporting that 20 mg Copaxone has to be taken every day or it does no good.

This thread shows that there's a lot of conjecture out there -- even from medical professionals that should know better -- that doesn't stand up to scrutiny.

[leslie0321]

thank you both for your information. I guess I should at least get a prescription for my 20mg and just take it the way I have been taking it. My MRI showed that I only had 1 small change in the last 10 years. or, I can just chance it and not take anything. hmmm, I guess I have some sole searching to do. But, thanks again for your thoughts, it was very helpful.

[Mamabug]

Yes; it isn't true that you must inject Copaxone 20 every day or it isn't doing any good.

When I started Copaxone 20 had major site injection problems. After I tried multiple ways to remedy the problem, my MS Specialist injections 4x per week, which I did for quite a few years. Even at the reduced fx, Copaxone worked much better for me than Betaseron had. I went from one or two major flares per year on Betaseron (all of them required hospitalizations for one to three weeks) to four minor flares in five years (zero hospitalizations).

The Fletcher study is the one that I recall reading about in the past:
http://www.ncbi.nlm.nih.gov/pubmed/11852290

But, here is another study:
http://www.peerviewpress.com/efficac...-presented-aan

I do wonder, though. Is there a reason you don't wish to consider Copaxone 40? I switched to that about a year ago. Now, instead of injecting 4 days per week, I only inject 3x per week. Also, I am getting the full recommended dose. Although the reduced frequency worked for me, I'm waiting to see if this one will work even better.