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What does research mean in laymans terms?

Hi - I am dx with RRMS and am hopefully starting treatment in the next few months, any advice would be appreciated.

I am trying to choose which DMD would be most appropriate for me. I have used the MS decisions website and read through ms society/trust publications. Read lots of anecdotal experiences on this forum and tried reading scientifically controlled research studies online (which i must say seem to be thin on the ground) - im now more confused than i was before!

I have narrowed it down to Rebif or Capoxone.

Rebif because it seems to have have the best results for delaying disability and is very effective at reducing severity of relapses (but agin could be reading the information wrong as i’m not a scientist)

Capoxone because it seems to be the most well tolerated DMD and has few side effects. The downsides (i think) is it has no proven delaying outcome on disability progression.

Does any one have any insight into which dmd is most effective at delaying disability - think this seems to be the biggest factor for me, after reducing relapse frequencey but accouding to the studies i have read, they all seem to be as effective as each other? Excluding tysabari/gilyiana which i’m not allowed anyway!

Any thought welcomed.

Kind Regards

Hi,

The reason you are given a choice in the first place is they are all about as effective as each other. If there was a clear winner, the medics would be failing in their duty to you, not to advise which one. But the view at the moment is it doesn’t make enough difference to prefer one over another - that’s why it’s left to the patient to choose which one best suits their lifestyle.

I’m not on any of them, by the way - just to be clear. But I do stil read the research, and the pros and cons (I like to know what’s out there).

I do think, according to research so far, the interferons hold out better promise than copaxone, for delaying disability progression. But the neuro I saw last time (who was not my usual neuro) was cautious about ANY claims for reduction in disability progression. She didn’t feel that had been conclusively established for any of them.

She didn’t say why, but I’m guessing it’s at least partly because the timescales you have to look at are so long. These are still relatively new drugs, so we don’t have that much evidence yet, of what happens after decades. So I guess you just have to go with your gut, and trust that if there were a STRONG case for picking one over another, it wouldn’t have been left up to you!

Tina

And to add to the confusion, there are two strengths of Rebif, so make sure you know which dose was used in whatever research you read. But let me back up a bit…

It’s important to recognise that it’s now known that progression and relapses are different processes, however both cause disability: progression as a gradual increase, relapses as step changes. Trying to differentiate this in a trial is really hard though, especially as it’s perfectly possible to have long drawn out relapses with a sort of cascade of new symptoms, to have mini relapses that don’t last very long, but still add to disability, and to be still getting better more than a year after a relapse. Add in the fact that trials are generally only a couple of years long, and you have a bit of a methodological nightmare :frowning: And this is the reason that there is a degree of doubt about the claims some DMDs make about their effect on progression: there just isn’t a good way of measuring it in a trial.

An alternative way of looking at it is how long it takes people with RRMS to progress to SPMS if they are / aren’t on a DMD. Unfortunately, different studies find different things so it’s hard to draw any conclusions. If we take the hard line, that it makes no difference, then we have to consider why we bother taking a DMD at all. One argument in favour is that, if we are going to become SPMS anyway, then it’s probably best to have as little disability at that point as possible, because more is coming whether we like it or not. That would be my view anyway.

The fact is that we don’t currently have an effective med for progression. However, it appears that starting on an injectable early on can delay the onset of disability (I think they all report this effect?). The injectables also reduce the number of relapses we have, which means that we avoid the associated disability that they would have brought. They also reduce the severity of the relapses we still have, which means that we don’t get such severe disability from them. It’s none of it a guarantee though - an average relapse reduction of ~30% says that loud and clear: some people do really well on them, some people find they don’t help at all, everyone else is in between. Meanwhile, progression may be happening along side, only marginally reduced.

So, basically what I’m saying is that what works best at delaying or preventing disability depends on what source of disability you mean. If you mean disability from progression, then Rebif is probably more likely to help than Copaxone according to the data, but how much it helps is debatable. If you mean disability from relapses, then I don’t think that there is a whole lot between them if you look over all the data, although Rebif44 did really well in the Campath trial so it may have the edge. But this doesn’t tell you much about Rebif22 which may be all that is on offer in your PCT (I would guess that it’s a coin toss between it and Copaxone). And it may all be irrelevant if, for whatever reason, you cannot risk Rebif’s potential side effects.

Ultimately, therefore, the only right choice is the one that is right for you as an individual.

And that often involves ignoring the data and going with your gut instinct!

Karen x

Wow thanks for your replies.

Tina, you are right i have never looked at it from this perspective before, i always assumed it was my choice as they couldn’t choose one pharma company over another. Thank you for giving me a different perspective.

Karen, thanks for such a detailed answer. I am most concerened about disability from progression, think disability from relapse is ineviatable (in varying degrees). I was aware there were two varients of rebiff but thought you went from one to the other, not either or. Thank you for laying the facts bare for me, i appreciate it greatly.

You are both right it is going to have to come down to gut feeling, at least now i will have the facts to make an informed choice/guess.

Best Wishes