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Hi everyone

I am aware that not all of the drugs work for everyone but I have a question on the efficacy of the DMD's.

The efficacy for any DMD is given as a percentage, so copaxone is approximatly 30%, now I have seen this interpreted in two different ways, some people say that this means that on average, you could expect a 30% reduction in relapses however, I have also seen people say that this means the drug only works in 30% of users.

I would really appreciate it if someone could help clear this up for me.

Thanks

Brian
Hi Brian

As I understand it Copaxone is thought to reduce relapses by 30%.

Rachel
It depends on the data point. Lesion load can be looked at as a percentage reduction, but when reviewing the number of people who were relapse-free or free from disability progression, you are looking at the percentage of people affected. NEDA, no evidence of disease activity, is being reported now as a data point, and newer drugs are accomplishing this for a percentage of users. This should be the goal of your neuro - to find a drug for you that achieves NEDA.

Mars
Thanks for the replys.

Rachel - This is what I understood it to mean.

Mars - It was your post on Aubagio that prompted me to ask this question, In that post you said,

"Yes, a 50% efficacy means it may be more likely to work for you than one with a 30% efficacy, but that does not mean it will work more for you. If you're part of the lucky 30% or 50%, then that means that drug works for you."

I hope I haven't taken this out of context or misunderstood, but that suggests to me that 30% or 50% efficacy means it only works for 30 or 50% of users, and this is not the first time I have seen it used this way.

After Two and a half years on OMS, I am still having Relapses roughly every Eight to Ten months, so am considering starting Copaxone and would like to make sure what the 30% efficacy figures actually mean.

Thanks

Brian
Hi Brian

Just to say, I started on Copaxone in February 2014. I had already been on OMS for a year at that point. When I saw my Neuro earlier this year to check how I was getting on with Copaxone he was very surprised to hear that I hadn't had a relapse for almost two years as I had been having roughly one a year. He said that, even being on the Copaxone for a year, he would have expected me to have had a relapse. Of course, he didn't think that OMS had anything to do with my lack of relapses!!

For me, Copaxone is a safety net until I stabilise on OMS. I am sure that it is going some way to slowing progression, but from my Neuro's comment I am not sure I would be doing as well if I wasn't following OMS.

Rachel
I have been very lucky to have a neuro that practices the modern technique of aiming for NEDA. Talking with him about the drugs has led me to understand the trial results in this way. He gave me a choice of all 12 drugs and said, "it doesn't matter which one you choose because I'm going to assume it doesn't work for you until at 6 months and at 1 year, I see no activity."

The trial results will show how many people were free of disability progression or relapse, which for Aubagio was 80% and 57%, respectively. Regarding disability, this was 30% fewer than placebo. Thus, I have an 8 out of 10 chance of being free from disability and 6 out of 10 chance of no relapse due to placebo, natural disease course, or the drug. Doesn't matter which one to me.

Long term studies of Copaxone have shown that it is more affective in the long term with people actually reducing in disability. This is very attractive, but I made my choice more on the mechanism of Aubagio - modulating T and B cell proliferation. The best treatment (also risky) out there is HSCT. By wiping out all your immune system and replanting, you have a good chance of very long term (possibly permanent) remission. Thus, the T and B cells are being found to play a critical role in the disease. More so even if you look at the new drug that will likely come out next year, Ocrelizumab. It wipes out B cells, then you regrow them. Disease activity was seen to drop to zilch at two months and there's the possibility that you have fewer treatments with time as the naive B cells repopulate your system.

Remember, like my neuro said, it only matters what works for you. Make your doctor do MRI's and EDSS exams at the 6 month mark if they aren't already. I would prefer 3 months, but the drugs apparently take longer to really get momentum. You have many choices and one is bound to be right for you.

Mars
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