Forum

Success rate

is it possible to find the ‘success rate’ of various m.s. drugs -

I guess defining ’ success rate’ isn’t easy and it may not be possible to prove that someone has benefited from a drug because they may have improved anyway.

However it would be helpful to know how many pwms are on say, Lemtrada and how many are stable/improving/not improving.

Also haw many people reported unpleasant side-effects.

At the moment it all seems a bit hit and miss and possibly risky.

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When I started on Betaferon, about 13 years ago, I read that it wasn’t possible to gauge the effectiveness of a DMD. This is because the disease is so variable, in the person suffering from MS as well as in the general population of sufferers. It’s impossible to know whether a lack of relapses is due to the drug, or whether the person wouldn’t have relapsed without the drug. This is why DMDs are part funded by the government and part by the drug companies.

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Isn’t that what clinical trials and their results are for? Yes it is hit and miss. It’s a variable condition.

I’ve also been on Betaferon for about 15 years and will never know if it’s made any difference to my relapses but it’s not a risk I’d want to take. Either way, it hasn’t done any harm and I’d do the same again.

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there are/have been clinical trials of DMD’s - but where are the results?

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There’s stats on the MS Society’s own guide to DMDs. Click on each medication here and scroll down to the bottom. https://www.mssociety.org.uk/dmts Dan

Clinical trials serve two purposes. One is to find if the drug is effective for treating a specific condition, the other is to check for side effects.

Although I started Betaferon in 2004, I came off it in 2009 after having two relapses. I found that it had been causing depression, so I was happy to go on a clinical trial for Gilenya when my neurologist offered me the chance.

thanks Dan it’s encouraging to see how many people stayed relapse free when on various DMD’s and surprising to see how many people who were on a placebo stayed relapse free.

I’m very much a believer in the power of placebo. I know many people think that, if an effect has been caused by a placebo, then the effect isn’t ‘real’, and dismiss it. But I think they’re chucking the baby out with the bathwater. Just because the placebo isn’t real, doesn’t mean the physical effects aren’t. The mind is an incredibly powerful thing. But also, in this case the placebo might not have had anything to do with it - people could have been relapse-free without taking anything. To really know, we’d need to see the results compared to a control group who took nothing.

Dan

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Very interesting stuff.

I was on a double blind trial of Tysabri for SPMS for about 3 years. None of us knew if we were on the active drug or the placebo. Just about all of us suspected we were on the placebo when it seemed there were no changes in the measured progression of our MS.

Then the drug company pulled the plug on this global trial.

2 years later I found that we had all been on the active (and expensive) drug.

My point here is that at different times and for various reasons we all had numerous perceptions and measurements and comparisons. I for one seem inert to many powerful drugs whereas others have huge main & side effects. It must be pretty difficult to come up with hard and fast data. In my opinion the best we can get is the balance of probabilities based on a vast number of cases and trials.

I would like to think that organisations like the ms society keep an eye on loads of different information sources and if there is compelling evidence in one direction or another they will shout it from the roof tops.

This is why I am careful when offering opinions om DMDs, what works for one person is the best DMD for that person.

So please keep an open & questioning mind whilst researching the therapy for you.

Mick