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I've been reading mixed reports on the web about copaxone and it's effectiveness.

http://www.msworld.org/Resource_Center/ ... edcop.html
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Seems the most promising data I can find, which is consistent to what I read. The longer one takes copaxone, the better it will work. This seems to be ideal in my situation as I'm young and was picked up in MS's early stages. I dont feel I need to go on an "Agressive" interferon as it ruins my quality of life.

So basically two studies say it's does nothing, one even says it makes it worse. This is quite concerning for me because I can't really handle interferon.

I'm having a hard time what to believe. I will take this stuff IF IT WORKS, but from what I read, it's very hit and miss, and the studies shown could have easily been ones where the patients did better by chance or had less disease progression than the other group, none specify.

Can anyone guide me on this, or direct me to a GOOD study? PM's will be fine if you dont wanna bag copaxone in public. I'm not bagging them, im just questioning it's "Efficacy". From what I gather, it's basically useless. I hear from some people it's great though.

I'm a bit lost. At first I thought copaxone was the shiznit, but now I'm starting to wonder. It seems good in theory how it works, but I get very mixed reports.

My "Research" is below, if anyone could perhaps verify, or exapand on it, or point out anything I've obviously missed that'd be good. Sorry for my long post, but for me, deciding between this, or no med, may be one of the most important decisions of my life

PS: I will also endevour to be taking LDN, havent started on it yet, but results looks very promising from the anecdotal evidence. I intend on combining the two therapies.

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http://www.themcfox.com/multiple-sclero ... veness.htm shows that copaxone was 7% more effective (relapse rate wise) than a placebo. Not very promising.

How effective is Copaxone ®?
% of patients relapse free at 2 years

Placebo 27%
Copaxone 34%

Number of patients progression free† completing 2 years of Copaxone ®

% of patients progression free at 2 years

Placebo 75%
Copaxone ® 78%

Mean relapse rate

Mean relapse rate over 2 years
Placebo 1.68
Copaxone ® 1.19

Average time to first relapse
Placebo 198 days
Copaxone 287 days

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http://www.msakc.org/medical/treatments/Copax1.htm states 0.6 on copaxone relapses vs 2.4 for placebo, that result is much varied from the other one

Also from that site-

"To test the therapeutic impact and tolerability of Copaxone, a second study was conducted at 11 different medical centers with 251 relapsing-remitting MS patients. In this study patients were given Copaxone or placebo for 24 months and the primary measure was the reduction of relapses. At the end of the 24-month trial, patients on Copaxone had a lower average number of relapses (1.19 for Copaxone compared to 1.68 for placebo). This difference equated to a 29% reduction in relapses between Copaxone and placebo-treated patients. Further analysis of the study showed that 24% of the Copaxone treated patients were relapse-free at the end of the study versus 27% of the placebo-treated patients. Also, the average time before the first relapse was more than 30% later with the Copaxone group than with the placebo group"

Doesnt that basically say that taking nothing was 3% more effective than taking copaxone? I dont understand. Perhaps someone can clarify, or they have their numbers wrong, or I should just dismiss this site completely. (URL above)

"Measuring on the EDSS (Expanded Disability Status Scale), most patients in the study did not experience confirmed sustained progression of disability (98 out of 125 or 78% of Copaxone patients and 95 out of 126, or 75% of placebo patients)."

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http://www.mult-sclerosis.org/Copaxone.html

6 of the placebo group (26%) and 14 of the Cop-1 group (56%) had no relapses. There were 62 relapses in the placebo group (average 2.7 per person) and 16 in the Cop 1 group(average 0.6)

Final 2-year relapse rate was 1.19 for patients receiving Cop-1 and 1.68 or those receiving placebo, a 29% reduction in favor of cop-1. Disability levels (EDSS) were also better in the Cop-1 group

ed: That's slightly more promising?

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http://www.msworld.org/Resource_Center/ ... edcop.html

During the six-year study, the mean relapse rate was 2.23 (95 percent Confidence Interval equals 1.78-2.68). This equated to an overall mean annual relapse rate of 0.42 (95 percent Confidence Interval equals 0.34-0.51; P equals 0.0001) per year for the 101 patients receiving Copaxone for six years. The relapse rate has continued to fall and during the last two years, patients are, on average, at risk of having a relapse every four-plus years.

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PhireX, I don't think I responded to any of your questions over on msworld, then again, maybe I did and just can't remember There is a lot more info out there about copax. XO had this nice summation of all the drugs over on mgh braintalk. http://brain.hastypastry.net/forums/sho ... hp?t=17213

You can find lots of info on Cowboys MS News, he stopped posting the news last summer, but you'll find a lot about copax on his site.http://www.mult-sclerosis.org/

Then there's this from this site.http://www.thisisms.com/modules.php?nam ... =0&thold=0

I've been on copax for almost 4 years now, no exacerbations, no change in mri in those 4 years. It is responsible? we'll never know for sure, but I would like to think it is.

Peter

PhierX,

I can imagine the frustration you must have after reading all that information about Copaxone. Depending on who you believe, the efficacy of Copaxone is all over the map.

There is a scientific organization in Europe called the Cochrane Group. It consists of totally independent docs and researchers. They took a number of earlier Copaxone clinical trials and went over the data with a fine toothed comb. Their conclusion: Copaxone is not very effective in the treatment of MS...in fact, they sort of hinted it was useless! Of course some supporters of Copaxone challenged their results and the fact that they looked at earlier trials only.

Even when the FDA originally approved Copaxone they had some criticism on the way that Teva (Copaxone's makers) interpreted the data from the trials.

Whatever decision you finally come to, insist that your doctor sit down with you and give you ALL the pros and CONS of whatever drug you use. In other words, become part of the decision making process.

Harry

It's funny Harry, I had a felling you would have something to add. I almost finished my post with " and now a few words from Harry".

Here is another link I just remembered http://www.albany.net/~tjc/copaxone.html

And this http://www.thisisms.com/modules.php?nam ... =0&thold=0

Peter

What I find strange is "Rarely, a transient Self-Limited Systemic Reaction followed the injection in 15.2% of those receiving Copolymer-1 and 3.2% of those receiving placebo." so 3.2% of people taking nothing got these effects? I find that strange...

Anyway any info is good info to me. I have the neuro appt. tonight but Im still weighing up whether or not copaxone is effective. Some point to less effective in the short term, but more effective long term, some point to useless completely. (one even pointed to worse)

So I'm almost thinking no CRAB and just deal with it..altho that may be an option I regret later on down the track..

Peter,

You had to know I would be in the background, somewhere

Here we have two different groups of scientists commenting about the efficacy of Copaxone and holding very different conclusions. It's not only with Copaxone but the same situation exists with the other interferon drugs.

Just how is the average MS patient suppose to know who is right?

Harry

PhireX,

What I find strange is "Rarely, a transient Self-Limited Systemic Reaction followed the injection in 15.2% of those receiving Copolymer-1 and 3.2% of those receiving placebo." so 3.2% of people taking nothing got these effects? I find that strange...

Yeah, kind of makes you wonder just what was in the placebo that these people were getting. A friend of mine who has done MS research, told me that companies doing clinical trials don't have to list or disclose the contents of the placebo that the patients receive. The placebo is supposed to be an inert substance. So why did those 3.2% have that reaction? You don't suppose that the placebo contained something to cause this, do you? No, I better stop thinking that way!!!

Harry

Well I'm gunna give it a go, I just wished there was more convincing evidence out there of it's effectiveness. I've got no doubt it works, somewhat, but how effective it is remains somewhat of a mystery.

My LDN suggestion was rejected. Ive been referred on to an MS clinic though which specialise in alternative treatments, so I might see what comes from that. Plus seeing the GP tomorrow, dont see why I couldnt get one off him. I had him in mind 1st for giving me a script.

My neuro wasnt even interested in the LDN stuff which was a bit disappointing. He said "we dont know if it will interfere with the copaxone" I was about to say it's not your f***ing body dude that could end up crippled one day!!

Anyway I'll stop venting now, Hopefully tomorrow brings me more luck!

PhireX,

Well I'm gunna give it a go, I just wished there was more convincing evidence out there of it's effectiveness. I've got no doubt it works, somewhat, but how effective it is remains somewhat of a mystery.

Sort of goes along with the entire world of MS medications and the disease itself...one big mystery with a lot of questions but very few answers.

My LDN suggestion was rejected. Ive been referred on to an MS clinic though which specialise in alternative treatments, so I might see what comes from that. Plus seeing the GP tomorrow, dont see why I couldnt get one off him. I had him in mind 1st for giving me a script.

It doesn't surprise me that most neuros won't rx LDN. There isn't any data for them to look at. However, there are a number of neuros that do indeed rx LDN to their MS patients. Two different docs who basically receive the same medical training but have different opinions on the same drug. Again, typical when it comes to the treatment of MS!

My neuro wasnt even interested in the LDN stuff which was a bit disappointing. He said "we dont know if it will interfere with the copaxone" I was about to say it's not your f***ing body dude that could end up crippled one day!!

Yep, sort of makes you very frustrated!! Why not ask the patient (you) what you would like to do as far as taking the Copaxone? Treating the disease and not the patient!

My wife, who has had MS for over 30 years (SPMS as of 1994) started on Prokarin in 2000. It has worked very well for her. When we moved here 2 1/2 years ago, we went to see her neuro at the MS Clinic (where she had been a patient for many years even though we didn't live here all those years) and asked if he would continue to rx the Prokarin as opposed to us having to go back to her GP in Toronto (original doc who rxd the drug) every time we needed a renewal. He looked at the one and only clinical trial done on Prokarin and although he wasn't convinced about the drug, he saw what it was doing for Marg and agreed to rx it for her. He placed her health above his convictions and treated the patient first. Not too common when it comes to the world of neurology.

Anyway I'll stop venting now, Hopefully tomorrow brings me more luck!

That's what these forums allow MS patients to do because not only is that important for you, what you are saying is understood by the vast majority of readers.

Take care.

Harry