Hi Has anyone stopped using betaferon after an long time? If so please could you let me know if you had any effects and/or relapses. I have been on the drug for 17 years and although my MS is going down hill a bit my relapses which are few and far between (unlike before). My Specialist wants to take me off it as he has decided I am Secondary Progressive. Any advice would be appreciated. Thanks
Sorry, cannot help but this should bump you to the first page - hopefully someone else will be able to help
I’m in a very similar situation to you, I have been on betaferon since March 1996, so 17 and a bit years. My walking and balance are much worse than they used to be but it is a long time since I had a relapse. I saw the ms nurse yesterday (annual appointment), she just asked how I was and if I wanted to stay on it, I said I did and that was the end of that conversation so guess I will be on it for the next year then. Must admit I feel that I want to stay on it and I do try to steer the conversation away from too much discussion about it! however if it is licensed for relapses in sp ms so how do I (or you) know we wouldn’t have a relapse if we didn’t take it. I’m no help, I’m sorry, can I ask where you are because it was very difficult to get betaferon as long ago as you and I started on it. I’m in Aberdeen. Cheryl:-)
I used Rebif for just over 10 years so not quite as long as you.
I came off Rebif 3 years ago and like you was apprehensive about the future.
However I have not had an relapses in the 3 years. I also do not miss the injections and yearly appointments at hospital.
Infact I think that I was better emotionally when I got used to the idea of no medication. My MS is still my MS whatever label they want to use.
I do wish you as well as you can be.