I've been on Avonex for 6 -7 years. My side effects aren't as severe as when I first started. Mostly some fever for which tylenol helps. Achiness and tightness for the following day is the bigest thing now.
I have been on Avonex for 9 years now. My first year was very difficult due to the side effects. Everybody is a little different and I found Tylenol to be nearly useless for countering the side effects. Ibuprofen works much better for me. I found that I get less side effects if I take my shot in the middle of the day. About 3 to 4 hours later, I can feel my muscles start to ache and cramp up so I take some ibuprofen, usually 200 mg. This is usually all I need though sometimes I will take another 200 mg the next day. However, when I was first starting with Avonex, the side effects were much worse and I would need to take 400 mg of ibuprofen at the time of my shot and then every 6 hours after that for the next 24 hours. Have you ever tried using ibuprofen?
I have RRMS but honesly I don't think I've had any relapses for some time. Just symptoms better and worse day to day depending on what I do with myself. I don't think I attribute my steadiness to the Avonex. I really think it's more because if the lifestyle shanges I've made by leaving the workforce. I really think stress is one SOB and I can just feel it in my legs when I am stressed.
I also don't feel that I have had a relapse since being on Avonex. However, in the last year or so I seem to have become much more physically limited and my walking ability has worsened to the point that I sometimes choose to use a cane if I know that I will be walking some distance, more than one half mile. For me, this has been like a vicious circle. For example, MS makes it difficult to do things, therefore you do less, as a result, it's even more difficult to do things.
I'm debating on quitting my Avonex. I hate injecting with a passion and yes I do auto inject. I hate the side effects. Honestly I question if this drug is doing anything for me. I believe the rate of effectiveness on it was only 29 % on chances of reducing relapses. To this point I've stayed reasonably well and that's why I've stayed on the injections to this point.
I have also been tossing around the idea of stopping since I honestly don't know how much good it's doing me anymore. The rate of effectiveness discussed in the doctor's prescribing information pamphlet isn't all that impressive (see this post
). However, it has been shown to reduce atrophy
especially with continued use, i.e., after the first year, so I hope that it's doing me some good. I've thought about going on an extended Avonex vacation for a period of time to see what happens. However, I'm concerned that I would then have a truly disabling relapse as compared to the slow spiral of the vicious circle that I've described above. However, those are just some random thoughts. I haven't decided to jump ship just yet.
By the way, I was wondering which form of the drug your taking, the prefilled syringes or the powdered form? I take the powdered form and I've heard from several people that they have less side effects with it.