Forum

DMD decision...

My current relapse has made me eligible (finally) for DMDs, but I’m at a loss as to which to pick. I’ve been on MS Decisions, but bizarrely it hasn’t really helped! My nurse suggested that with two young children I may want to avoid flu symptoms so copaxone could work, but this had no evidence of slowing progression which is very important to me (obviously). Injection frequency doesn’t bother me (had IVF and took daily blood thinners during two pregnancies, so I’m a bit of a pro at self-injecting into muscle or under skin!). What are people’s experiences? The nurse hinted that rebif is what all other drugs are compared to - does that mean it’s set the standard? So difficult to decide! I have one month until my next appointment to get started. X

I chose rebif, it’s the least injection-looking as its all done with the rebismart gadget, and doesn’t need keeping in the fridge so much. I do get flu side effects, but they don’t persist to the morning. They seem to be worse if I am generally fatigued anyway, if I feel ok it’s not so bad.

Rebif got great results in the recent trial vs Campath so it’s arguably the most effective of the injectables. Saying that, I believe that Avonex actually reports better data for slowing progression, but then its relapse prevention data are the weakest.

The Campath trial was the thing that convinced me to go for Rebif (actually Rebif44, the higher dose), but I’ve been unlucky with the side effects. If I hadn’t already tried Copaxone, I might have given up on Rebif. It’s now 21 months since starting and, although I’m still taking a lot of paracetamol on Rebif days, the side effects are fine, but the first 18 months (especially the first year) were not fun :frowning: But I was very unlucky compared to most by all accounts and it doesn’t help that I can’t take ibuprofen which apparently works better than paracetamol at getting shot of the “flu”.

Given the variability in how well the injectables work for people, the trial data are a decent guide, but may bear no relation to what you experience as an individual. All in all, that means there really is no “right” answer. Just go with whatever one you think will suit you best and, if for some reason it doesn’t work, you can always switch to something else.

Fwiw, despite the side effects, I am very happy on Rebif and it’s working well: no relapses! :slight_smile:

Karen x

I agree that ibuprofen is much better than paracetamol if you can take it. And you can take both together if needed.

Hello,

I chose avonex on the basis that if iam one of the unlucky one’s that get the side-effects it only happens once a week. Unlike rebif which may happen 3 times.

I didn’t want it effecting my job, so i chose to inject on a friday so i only lose saturday to side effects. The first injection was the worse for the flu symptoms, but after the first few weeks the side effects have stopped.

Darren

A very happy avonex user

I’ve opted for rebif, mainly because its less needle like and I am very needle phobic. I have heard of some getting side effects but manageable, some getting side effects which clear and some not getting any. Also obviously some that it doesn’t work for at all. I think it’s important to remember you can change if it doesn’t work out. I went for rebif aswell because that seems to be one of the more effective ones. For me I think if it didn’t work out ie side effects I would then change to copaxone. But fingers crossed rebif will work. Not looking forward to it but if it stops or lessens relapses then its worth a shot. X x x

I chose Avonex, the frequency of the Injections and the method of delivery were key in my decision.

With the Avonex Pen I inject once per week, I suffer the side effects every time (lucky me!) although I only have to worry about injecting, remembering and being weak the following day for planning my life around it, the one time per week.

The addition of the pen being an all in one product that doesn’t require me to self inject with a synringe was also beneficial, since at the time I had never injected myself for anything before.

Remembering is also important, the more you do it, the less important it will become, and sooner or later you will forget about doing it, possibly even relating your ms itself. Once a week keeps it more as a memorable event for longer I find. I’ve only missed one injection in 59 weeks of self medicating.

Also worth remembering is the frequency of injection sites, while Avonex requires bigger muscles and so can only go in your thigh muscles, you inject less often, so your legs have more time to recover and not suffer from lumps which you may get from more frequent injections of other drugs.

Whatever you choose is up to you, but honestly if you can put up with the Avonex flu like side effects, it seemed the better choice in every respect.

Thank you all for sharing your thoughts - that’s really helpful! Despite the nurse suggesting copaxone, I have been leaning towards Rebif or Avonex since I was first dx’d (before I found out I wasn’t actually eligible!). So at least I’ve narrowed it down a bit now! Luckily I am fine with ibuprofen and all other pain killers. Thanks again! X