been on avonnex now for seven weeks am feeling so ill,
i had hoped that the side effects wouldnt be so bad
i am litreley taking the injection on thusday eveing and im ill for at least three days
luckily for me my husband and daughter are here to look after me
flu symptoms feeling sick bleeding, gums black eyes, achy fatiged u name it i have it justwent to shop in car didnt think i would be so exsausted i dont like it i now have no weekend at all sorry have to moan is it worth it xxx
That sounds horrid! Have you spoken to your MS nurse or neurologist? Even if they are keen that you give it a bit longer to let things settle down, I think they should know how badly you are struggling here. Those side effects do not sound normal to me, and not acceptable either. There are alternative drugs, so do not despair if it turns out that this is not the one for you.
(By the way, I was on Avonex for years and years and never felt worse than mildly hung-over the morning after - I wouldn’t have put up with side effects like yours, that’s for sure!)
My regime was injection last thing at night, take a couple of ibuprofen before bed, then a couple more on wakign in the morning. That did the trick for me but, as I say, my side effects were so much milder than yours anyway.
I am sorry that you are struggling, and hope that things improve for you soon.
Alison
Thank you alison and j . I have managed to get in touch with my ms nurse today . Who was surprised to hear how bad the side effects were for me although she did know of others and has told me she is going to see neurologiston thursday so will discuss with him what we should do she thinks he may stop it. So hopefully i can sort of carry on tjank you for replying i dont often come on here but its usually when i cant cope and aometimes need reasurance from outside my box as to speak xxxx I do know that no one drug is the same for all but this is certaily not for me xxx
Hope you get more info and help today that’s not good. I’ve had burning and extra stiffness since starting extavia but also another relapse at the same time so don’t know what’s causing what. But they’re thinking of changing me to a second line dmd anyway. Hope you get some relief soon. Take care x
I was on it for 7 months after initial Dx. Hated it. Hated the whole routine associated with it. Would do some cardio work, break a lite sweat, inject, take aspirin, drink lots of water, and knock off early. About midday Saturday I would begin to feel human again. Sorry it’s hitting you so hard.
Good luck.
I was on it for 7 months after initial Dx. Hated it. Hated the whole routine associated with it. Would do some cardio work, break a lite sweat, inject, take aspirin, drink lots of water, and knock off early. About midday Saturday I would begin to feel human again. Sorry it’s hitting you so hard.
Good luck.
Hi, I’ve been on Avonex for 13 weeks and my side effects are just starting to settle down. I inject on a thursday night too as I don’t work then til Monday and it gives me chance to get back to normal. My side effects have got gradually less over the last 3-4 weeks but I still feel whacked out for 3 days. I went from losing 3 days a week initially and now get bad aches/fatigue, mouth ulcers, and nausea/chest tightness for the 12hrs while I’m in bed, then just the aches/flu/fatigue on friday. 4 weeks ago I felt like giving up but my side effects have lessened and become easier to bear. I really hope yours do too xxx