@JoMaccy24 

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JoMaccy24

Bad Reaction to Plegridy / Avonex Experiences

Hi, Hoping to get some advice about some recent reactions I've had to taking Plegridy. The last two times I've taken the injection I've had a really intense neurological 'episode' a few hours afterwards: sudden drop in body temperature (33.8 degrees on the thermometer) whole body shaking because of the cold, numb and freezing fingers and toes and a twitching eyelid. On both occasions it's come on suddenly and lasted about 50 minutes. I've spoken to my neurology department and they said they've never heard of a reaction like this before. Has anyone else experienced anything similar. I think I need to change my dmd - I'm thinking about Avonex if anyone can share their experiences with that drug too?
@NatalieNoor

Oh no, hope you’re ok. I need to start treatment soon was recommended tecfidera, tysabri, kesimpta or cladribine.. but I’m thinking of trying starting copaxone. Hope you’re ok.

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@nolj

I was on Plegridy for a couple of years. While I never got the same extreme side effects as you, I regularly suffered some in the form of: within an hour or so, first of all I would find myself wanting to stretch out my legs .. then I'd start feeling 'off', not nauseous, not headache'y, just 'out of sorts', and all quiet in myself, I couldn't bear anyone talking noisily in the same room as me .. then it led to my 'core' feeling a bit cold .. later, when I went to bed, I might sleep very poorly .. a miserable night 😵‍💫 All this didn't necessarily happen with *every shot but it seemed to coincide with failing to drink enough water, I mean about 3 pints! I'd have to start this an hour *before the shot and continue after it. While even this mightn't prevent these side effects, it seemed the only trick. Same experience with Rebif, lousy; I would be thankful Plegridy was only once a fortnight compared to thrice-weekly but dread it all the same. In the end, I was desperate to get off injections and onto any oral med. Behold: Aubagio! 🙏

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