Hello everyone, I’m John and this is my first post on here. I was recently diagnosed with relapsing remitting MS after several MRI scans following optic neurosis 4 years ago and then a spell of double-vision in April last year.
I had my first appointment with the MS nurse yesterday and she has recommended that I see the neurologist again for a prescription of disease modifying drugs.
I have been given a choice of 4 DMD’s – Avonex, Betaferon, Rebif and Copaxone. I’ve also been given a stack of booklets and DVD’s which haven’t really helped my decision. At the moment I’m leaning more towards Avonex as that only requires one injection a week which is preferable to daily injections but I don’t want to base my decision purely on the frequency of injections…
For example, the side-effects – I know these are always potential effects and not definite but are some effects more likely than others? I am particularly concerned when I see that anxiety and depression are potential side-effects, I’ve had issues along those lines in the past and I would prefer to keep them in the past!
If there is anybody here who could share their experience of these DMD’s it would be very helpful.
Go to msdecisions website. It explains all you need to know
I liked Avonex because it was only once a week (which seemed like a perfectly good reason to me!), although to be fair there was not choice in those days and you took what you could get. Seriously though, it just seemed to me to intrude less into my life than the alternatives that needed more frequent administration. Side effects were not bad. Do the injection before bed, couple of ibuprofen before lights out, couple more in the morning on waking, whether I felt I needed them or not (v important, that) and I would be fine. A little delicate until about lunch time, but then OK. And then it’s a whole week until the next one.
Good luck with your decision. I hope you find something to suit you well.
Alison
x
Hi John, and welcome 
Do look at the msdecisions website - it’s really good. I chose Copaxone the first time because it has the fewest side effects. It kept me pretty much relapse free for about 3.5 years and I was very happy on it. The injections are a doddle and, because they’re every day, they soon became part of my getting up routine. Unfortunately, I started a nasty relapse after that and my neuro took me off it. Long story short, I chose Rebif second time. My reason was simple. If I had to risk the flu, I may as well take the one with the best data - the higher dose of Rebif (44mcg) is the best of the four standard DMDs for reducing relapses according to recent studies. I use the Rebismart auto injector which is a very snazzy piece of kit - I’d recommend it. Unfortunately, I have not been lucky with side effects. Even now, about 19 months since starting, I go through a heck of a lot of paracetamol. The upside is that I haven’t had a relapse since I started on it which is brilliant Each of the injectables has pros and cons and there really isn’t a “right” decision: just go for the one that you think will suit you best. The numbers that are quoted (eg 30% reduction in relapses) are averages: there are some who do worse and some who do better with each of the four. Hopefully you’ll be one of the ones who do better with whatever you choose. Karen x
Hiya
Welcome aboard.
As the others have said msdecision site is a good place to go.Do the tool at the end and it weighs up the pros and cons and comes up with what appears to be the best for you according to your answers.
The important thing is to think about your answers realistically as to what your views are.You can go back and tweak it as often as you like. Many of us found it a great help.
Then I’m afraid its a leap of faith as no two people react the same to anything.
I chose copaxone,and who would imagine choosing to inject daily!!! However the lack of flu symptoms,being able to keep it out of the fridge and the not needing blood tests made it the one for me.
Yes I get itchy lumps…but no relapses. I am more than happy to keep my lumps.
I wish you well
Pip
hi
I was diagnosed 18 months ago and been on rebif for 11 months now, i too have a history of depprssion and anxity but had no problems with rebif making my symptoms worse, i got nasty flu like syptoms for the 1st month or so but they soon were off, so its well worth trying these dmds , if your deppression does increase you can always increase your anti depression tablets to balance things out, ms can also cause deppression so neros arent even sure the dmds increase problems with depression its a grey area really,
sue