hi
My name is Mara I took Avonex when I was first diagnosed in 2000.
I was only able to handle the pain of the side effects for about a year before I had to change to beta serotonin . Which I stayed on only for about two years.
I have been on 7 DMT’s in 25 years I am currently taking Ocervus.
Mara
Welcome!
Welcome to the group. You lasted longer on avonex than I did. I only lasted about 8 months before I switched to tecfidera.
Betaseron, not beta serotonin
I took Avonex for 16 painful years.
I used Avonex 20 years ago. It, and Betaseron, were the only DMTs available. It did its job but I quickly got needle fatigue and switched to Tysabri, when it became available. Then I went to Aubagio and then Lemtrada. Each of them helped slow my progression But now, after living with MS for 42 years, I'm done with DMTs.
As you know, Lemtrada could be the last DMT you'll need. It was for me and, so far, I shouldn't need any more DMTs.
It's definitely my last. I'm 74 years old. Been there, done that.
Welcome!!
Hello Mara, I am sorry you had such side effects. I was on AVONEX for 24 years. I did stop a couple times as I had 2 babies during that time. I did at times suffer with flu like symptoms but for the most part I did well on it. I could not take Tecfider or others because risk of brain infection. I am now off treatment per doc because of my age.
I was on Avonex for 3 years. The side effects were rough in the first year but gradually got better. I went off it because I passed out and fell one night a few hours after the shot. I don't know if there was a connection there but didn't want to take a chance. Later I was on Copaxone for nearly 3 years, off it for 10 years, and have been on it again in the last 2 years, this time in the 3-times-a-week form. I've had MS for 42 years like someone else who posted in this discussion, and I'd have given up on MS drugs too by now except for COVID. I read some very slight evidence that glatiramer acetate (Copaxone) may offer some protection against COVID. On the offchance that that may be true, I went back on it--and there's always the chance that it might help slow down the MS. You just never know. The whole thing's a gamble as I see it.
Good luck with the Ocrevus! I've heard lots of good things about it.
I have used for over 20 years. I’m lucky for most of the time I’ve had someone else do the injection. My main side effect is getting very cold after the injection, I bundle up in blanket.
Hi, Mara! Glad you are here!
welcome here is to hoping that this does the trick ...it has for me now since 2017..
Welcome to the group! Ocrevus is working for me good luck with it
Welcome Mara,
I was diagnosed in 1993 and have taken several DMTs, including Avonex. I only lasted for 7 months on those injections. The last medication I took was Ocrevus which I took for 2 years. I stopped in 2020 when COVID-19 put everything on hold. I am now 60 years old and have not taken any medication for the last 3 years and have had NO disease activity or progression. 🤞 I am so relieved that we won't have to be on DMTs for the rest of our life!
that sounds like a lot. i can't imagine how many different side effects you've had to endure, but welcome.
FWIW, I self-injected Avonex for twenty five years. It was my long time partner in slowing this MonSter. Although I am a huge needle weenie, I managed to maintain tx from age 28 to age 55.
Buddhilini de Soyza/Wildlife Photographer of the Year
Long term use of Avonex, after age 60, new to site
Still taking Avonex and what helps
