This Is MS Multiple Sclerosis Knowledge & Support Community

Hello all, I am new to this board, neuro is trying to push me towards copaxone (I'm RRMS, I've been on LDN for almost 4 yrs, and have had only 1 relapse in that time and a couple of new lesions).

I am researching whether or not copaxone really works, 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"?

I believe that anybody considering a treatment should be fully informed about that treatment. Knowledge is power as they say. Anyways, you may want to read through a thread on the alt.support.mult-sclerosis newsgroup which discusses problems some people have had with injection site reactions. In that thread, I have also posted my thoughts on a potential cause of the reactions. Of course, those ideas are untested as far as I know at this time.

NHE

I have been on Copaxone for over a year now and doing well. My decision to go on Copaxone was rather straight forward for me, unfortunately a have a sister who also has MS and had been on Copaxone for about six years when I decided to go on it. She has also been doing well on Copaxone and she is a doctor. I know it can be hard to make the decision, I did read everything I could find about Copaxone and I continue to read udated information. Until another drug shows up which looks better I plan on staying on Copaxone.

Welcome Dean!

We are on Copaxone. On Avonex for about 15 years. Last batch of attacks signaled a shift to SPMS from RRMS and neuro put us on Copaxone. There have been no new attacks and we're also on Novantrone now. We've noticed improved walking and balance, cane has been put away for about a year now.

I've read a lot. I genuinely think Copaxone is a solid choice and they seem to have really good data. You might want to read my 101 and 102 posts (link below) to learn more.

Personnally, I'm very interested in Tysabri and Tovaxin. The antibiotics folks also have an interesting story. Good luck! napay

Last batch of attacks signaled a shift to SPMS from RRMS and neuro put us on Copaxone. There have been no new attacks

Hi Napay i just wondered what caused them to sat you are SPMS now if you are still having attacks, do you mean by that that you have good and bad days. You must still be able to distingush attacks, please elaberate on your condition.

My neuro says that in his practice he has seen Copaxone work beautifully for some pts and do nothing for others-- he has no idea why this would be-- differences in the sub- type of MS they have or differences in their physiological make up.

robbie wrote:

Last batch of attacks signaled a shift to SPMS from RRMS and neuro put us on Copaxone. There have been no new attacks

Hi Napay i just wondered what caused them to sat you are SPMS now if you are still having attacks, do you mean by that that you have good and bad days. You must still be able to distingush attacks, please elaberate on your condition.

My wife had gone over 15 years with an exaserbation maybe once every 2 years while on Avonex. Solumedural would correct the exaserbations and she'd return to her normal self. In the last year or so exaserbations come more frequently and the Solumedural did not seem to have such a lasting effect. Walking also became much much harder. The neuro recommended a change in treatment to Copaxone and then adding Novantrone later. Even after the first few months on Copaxone there has been significant improvement in walking and balance and no cane needed. We started on novantrone a bit after the Copaxone and are now into the 4th infusion. Between the 3rd and 4th we had something that seemed like an exaserbation, but was clearly different than prior ones. The neuro put her on IVIG and it cleared up and now the only problem is an excessive desire to garden when it's 90 degrees outside.

I realize one might credit novantrone with the benefits that she's received, and I suppose it's a combination of the 2. But, it is clear that somewhere along the way the Avonex was not doing it anymore. Also, the initial period on Copaxone but before novantone was accompanied by significantly improved walking. I know it's hard to nail down cause and effect and I would say this is a testimonial of sorts and if you have read my posts here, you know I don't go for testimonials. But, I think Copaxone and Novantrone have some good studies behind them and I know I read a real good one that was 5 years of combination treatment.

Until something better comes along, I like this. But, we're also taking sups and I will also say I bought shares of Opexa. ciao, napay

Honestly I cant fault copaxone.

I have been on it 4 years now and havent had a relapse since I started on it, previously I was on avonex and was having 2 relapses per year, with lots of symptoms in between relapses, and the side effects from the avonex.

With the copaxone I have much more energy, I have the feeling back in my hands, I rarely get pins and needles... I sometime wonder where the MS has gone.

I know it dosent work for some. But if there is any chance of it working for you then it might be a good idea to have a go. Im sure you can continue with LDN whilst on copaxone. The only side effect I have had is injection site reactions like bee stings, but its a small price to pay for me personally.


good luck in your decision

Hi Dean,
I have been on Copaxone for three years and going strong. I also take LDN. What's nice about the C is that other than some occastional site reactions I have had no side effects unlike the other drugs are reported to have. I was not about to have flu like symtoms 52 plus days a year. C's efficacy rate is in the low to mid 30% range, but that is an average. So it could be higher. I called Teva re: the Cochran study. Their point man that day at TEVA said the people in that study included RRMS and PPMS patients. So efficacy scores were likely depressed because of the mixed sample. You face tuff choices, I know. The literature on the CRABS sat in my closet for four months before my wife said," Maybe you should look at them and decide."
Good Luck!
Madman













i can carry about my business without

Thanks to all for the replies.

Thank you MADMAN for calling Teva to ask about Cochrane review, I'm awfully tempted to just pay the $20 and buy it off the Pubmed site just to double check that this is true.

My own neuro says he doesn't trust Cochrane much, said sometimes their studies are biased towards governmental policy about "what is the most cost effective MS treatment", e.g. in some European countries perhaps this article could have been used as justification not to pay for Copaxone.

The 26 yrs of data still bothers me, another poster indicated that the drug was on-market in Israel (Teva's HQ) long before US approvals came.

Thanks again!

DizzyDean wrote:Thank you MADMAN for calling Teva to ask about Cochrane review, I'm awfully tempted to just pay the $20 and buy it off the Pubmed site just to double check that this is true.

If you have a university library near you, then there's a good possibility that you could find the article there and just photocopy it. Better yet, if you have a USB flash drive, then you could save the articles and then print them out on your own printer which might cost less (and then you still have the PDF).

NHE

notasperfectasyou wrote:We are on Copaxone. We've noticed improved walking and balance, cane has been put away for about a year now.

Hi napay,
Maybe I should know this, but you know how crummy my memory is. I've noticed lately that you refer to "we" sometimes.

I looked in your profile and it doesn't say, but do you and your wife both have MS or is the "we" a figure of speech?

Bob

Lyon wrote:

notasperfectasyou wrote:We are on Copaxone. We've noticed improved walking and balance, cane has been put away for about a year now.

Hi napay,
Maybe I should know this, but you know how crummy my memory is. I've noticed lately that you refer to "we" sometimes.

I looked in your profile and it doesn't say, but do you and your wife both have MS or is the "we" a figure of speech?

Bob

Bob,
Yes, I refer to my wife's MS as our MS, because we are a team and we work on everything about MS together. While I can not know first hand the feel of the copaxone sting or the frustration with putting on earrings, I work hard to understand and support.
napay

notasperfectasyou wrote: I refer to my wife's MS as our MS, because we are a team and we work on everything about MS together. While I can not know first hand the feel of the copaxone sting or the frustration with putting on earrings, I work hard to understand and support.
napay

Hi napay,
I can't knock you for that.....it's wonderful. The only reason I questioned you was that I don't remember you using the term "we" earlier and I was trying to determine if it was my faulty memory or if something had changed.

Bob

Yes, I keep posting this but we need to find INDEPENDENT non bias, non drug company funded studies done by individuals with no Teva ties......Almost impossible.



2004 Copied from Lancet Neurology of Canada

In this week's issue of the Lancet Neurology, glatiramer acetate, known as Copaxone(R), was subjected to an independent review. The systematic review, called a Cochrane Review, performed by Dr. Luca Munari and colleagues, challenges the claims of benefit from previous industry- based publications.

A convincing benefit on disability and an effect on the proportion of patients free from acute flare-ups of the disease during treatment could not be demonstrated, "Glatiramer acetate is now routinely prescribed for MS and it is the fastest-growing product in its market. However our systematic review of all randomized controlled trials of glatiramer acetate found little support for use of the drug in patients with MS," notes Dr. Luca Munari of Italy's Azienda Ospedaliera Niguarda Ca' Granda.

These efficacy-challenging observations might come as a surprise for many Copaxone users. Most Canadian MS patients and prescribers are unaware of these early concerns about Copaxone's efficacy even though the FDA, the U.S. government agency which reviewed the product license application in 1996, was concerned about "data dredging" in the sponsor's own data analysis. The agency conceded then that the treatment had a very slim treatment effect, but approved the drug.

Cochrane Reviews are now being applied to the new drugs being used to treat multiple sclerosis. Given that Canadian neurologists prescribed $150 million worth of these new treatments last year, it is imperative that those without a financial stake scrutinize treatment claims.

"Canadian health care dollars are precious. We must continue to scrutinize treatment claims from the pharmaceutical industry and continue to design clinical studies, which improve upon from the missteps of previous studies," says Dr. George Rice, Neurologist and Director of the MS Clinic at London Health Sciences Hospital in London, Ontario. The Cochrane Collaboration attempts to distill a true sense of worth from all published and unpublished clinical trials of a given agent or intervention, despite industry claims. The approach is simply to obtain all published observations, to adjudicate trial methodology and quality and to perform statistical analyses of aggregate outcomes. The Cochrane organization is not-for-profit and is designed to provide realistic expectations of what drugs might do, for patients, prescribers and payers. Application of rigid methodology in Cochrane views generally leads to more sobering interpretation of treatment claims.

Beta-Interferons are widely used in the treatment of early, relapsing forms of multiple sclerosis. The Cochrane Collaboration scrutinized these clinical trials in a publication in Lancet last year. A consistent benefit on attacks and disability progression was identified for two years for which data were available. Concerns were raised about the relatively short duration of clinical experimentation justifying use of this kind of treatment in a disease, which is 40 or 50 years for most patients. Concerns were also raised about methodological problems across most of the studies reviewed, particularly the application of rigid intention to treat analyses.