I’ve asked this question before but I still need some input.
I had the MS nurse round today and she was outlining the different tratment options. I have narrowed it down to two treatments, Avonex and Rebif. From what I can see they are the same drug, beta interferon 1-a but just given in different doses. Avonex is taken once a week and Rebif is taken three times a week. Avonex is injected into the muscle and Rebif is injected subcutaneously i.e. into the fat just below the skin. It would appear that Avonex has less side effects but is less efficient.
I start work in the New Year, so I am just wondering, should I try and minimise the side effects by taking Avonex or should I just go for it and try Rebif? Has anyone had experience of th two drugs they could share?
I don’t have to make a decision until the New Year any feedback would be great.
This is a difficult decision i know and any advice you get here will be biased to the dmd that we are taking ourselves.
It is all about weighing up the pro’s and cons of each.
I have been on rebif 44 for 7 years. I have not had a relapse on it. I did not get the flu side effects but i did get a few headaches at first. In recent trials rebif has come out on top.
I decided on rebif because…
1 - the needle was smaller with rebif and with Avonex it had to be injected into muscle (i’m a wimp!)
2 - at the time i was diagnosed i was told that taking the drug little and often was more effective than one dose a week.(can’t remember who told me this though - sorry!)
3 - i didn’t want to inject every single day as i was concerned about injection site reactions. (i do get these from rebif but with 3 a week i thought my skin would not be as sore)
Everyone reacts differently to these drugs and the only way to see how they efffect you is to try.
When i started rebif i started on rebif 22 and was fine so then i upped the dose to 44. There are lower doses than 22 now i think so if you go for rebif you can start on a low dose and titrate up if you are doing ok.
Its best to start on a dmd now but you may find that sometime next year the oral drugs will be available and you may decide to change to one of those.
I have spoken to you before on another thread.
It would be good to get input from people on both drugs so hope you get a mixed response.
p.s. I would normally direct you to the msdecisions website to help you with your decision but i know this has already been suggested to you and you are looking for individual experiences.
Hello, I have been on avonex for about 8 years and it kept me relapse free for 6 lovely years. I chose avonex in the first instance as I hate all needles, regardless of size, so I went with drug that required fewest injections. Side effects were a problem for the first little while, but eased up and are rarely a big deal anymore. I only ever had 1 really bad injection site reaction, but after 8 years, despite rotations, I did start to see some divets in my thighs and some tenderness. My liver function tests have always been fine. Am switching to copaxane now, for a variety of reasons, but had a good run with avonex. Good luck with the decision
I went with Rebif 44 because it has the best data. (No surprise to anyone who knows me!) The thing is that those data are averages over a large group of people - so they give you an idea what you can reasonably expect, but we as individuals may experience something very different. It’s like IQ tests. The average is 100, but some people get a much lower score and some people get a much higher score. So I know people who have done brilliantly on Avonex and on Rebif and I know people for whom they didn’t work. So all we can do is pick the one that we feel is right for us. At least we know that we can switch to something else if it doesn’t work out. Karen x
Thanks for your replies. Appreciate it. .It’s just I am starting work in the New Year. Haven’t worked for over a year. Been doing my own stuff. So I could really do without being ill with side effects. I think I will go for Rebif on a low dose but put it off for a month whilst I get back into work as I feel pretty good at the moment. I have a slight problem with my left leg, which is improving by day and I have very slight balance problems, like being on a boat but when l am sitting down typing, doesn’t really affect me. Thanks that has helped a lot.
Its a hard decision. I was on Rebif for 3 years after suffering quite badly from relapses, although the relapses reduced dramatically I suffered very badly from the side effects which, by the time they faded was time for the next injection. When I discussed my issues with my consultant he suggested swopping to Avonex (he did say that if the relapses increased again I would have to change back to Rebif) that was 4 years ago and I am glad to say that the relapses did not increase. I do not have any significant side effects and although the needle is alot larger it is far kinder. Everyone is different so pick one because if you have problems you can always change over. Go for it, good luck