Hi everyone- I'm new to the site but have been reading away like crazy for two days. Lovely to read about
so many people with the same symptoms and issues as myself (not lovely that we all have them). I'll jump in more on some other topics, but couldn't resist this one tonight.
I was diagnosed w/ RRMS in 2003 and started on Betaseron right away. I had no relapses, though plenty of symptoms that flare up still. However, in 2007 I was running out of injection sites that weren't ruined with bruising and bumps and I had been anemic for a year despite taking iron. So I switched to Avonex.
Avonex side effects I had were way worse than any 'flu' symptoms from the Betaseron. Like tkelly I had to have help once a week because I was completely laid up for 12- 16 hours. I had to go to a 4/9s work schedule to have a day to recover from shot. So after six months and never more than a 75% dose I went off of it. I am 5 months without anything and I am pretty sure the last two weeks have been a relapse, though not severe enough for me to overcome my fear of solumedrol IVs (let's talk about
that somewhere else).
My point- My self-help group members explained that there are 2 types of AVonex. Pre-mixed formula and the type that you reconstitute. I had been on the newer pre-mixed which has caused some patients intolerable side effects who had done fine with the 'old' Avonex. Armed with that knowledge (my neuro never mentioned it) I am going to give the 'old' version of the Avonex a try. Just waiting on nurse to come out and teach injections. I did my own subcu's but never got up the nerve with the Avonex, but I will now. Copaxone is a possibility for sure, but check which version of the Avonex you were on.
A pleasure to meet you all.Hey Willowmom,
I thought I would start a new thread for you so everyone could say hello!! You have some fascinating information here. I have never heard this before but it certainly warrants some attention. I have talked to some that have been on avonex for years and have not had much trouble with it and others have just hated it. I wanted to wish you the best of luck with your switch. I hope you soon find a med you can tolerate. Please do tell us your fears of solumedrol. I have done the five day course and it really wasn't too bad. Anyway, welcome to HW.
Love and prayers,
Gretchen co-moderator MS board diagnosed with MS July 2006