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Nightmare on AVONEX

Morning all, been on Avonex now for 5 weeks. First 3 weeks were fine, didn’t even mind the injection side of it… Week 4, headaches from HELL … last time I had a headache like that it was after the lumber puncture when I was first diagnosed. Have got RRMS. But this year there hasnt been much remittance… Have had 4 relapses since last November, was eager to start Avonex to stop them but now on week 5 feels like here we go again. Have spoke to my nurse who asked if there was any new symptoms. No!!! just bloody awful. from belly button down, completely numb… same old symptoms and legs so heavy and balance is shit…

Just wondering if there is anyone out there suffered this on Avonex, nurses told me side effects normally for first 3 months… But to be this bad, dont think its just side effects, if so, Avonex is not for me.

My husband is really worried about me, can see it in his face… Oh love him, I just feel so frustrated because its impossible at the moment to do little things… I don’t expect to be 100 per cent but even 50 would be good… G

Hi Pink69, sorry you’re suffering at the moment with avonex. Just like you first few weeks absolutely fine, then wham side effects kicked in, been on it since December, and still feel a bit sh*t after most injections! but it is definitely not anywhere near as bad as it was. Keep going it will wear off!

Why have they put you on Avonex if you’ve had four relapses since last November? You qualify for a more effective DMD (Tysabri or Gilenya) which wouldn’t make you feel so bad and which you wouldn’t have to inject. Could you ask your neuro?

Hi Pink,

sorry to hear your going through the mill. Everyone’s different. I’ve been on Avonex just over 6 months and get side effects - flu and temperature but they are easing, esp the flu. I suggest talking to your nurse and Neuro again as clearly something’s not working. Don’t just put up with it without at least ensuring there’s a treatment plan in place that suits you

good luck

Adam

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Went to see neuro on Friday, got to have another MRI scan to see whats going on… Have been giving a walking frame from physio for the house, absolutely brill. Still cant stand for long, bought a perching stool but dont seem to be getting on what that… Have to take it back I think and look for something else. Any suggestions?