hi everyone not been on here for a bit but needed a little support,
ive been on copaxone now for just about a year now and have had small littlle reactions which i thought were PIR until two days ago when it really did happen
scared the living daylights out of me, id say i was a comfortable user of copaxone, did my normal injection took my cuppa into the living room sat down,only to realise that my head felt funny hot really hot, i couldnt catch my breath, felt like my head was going to explode, i was so scared was alone, couldnt get up for air all i knew was to keep calm, this went on for id say about half an hour or so managed to phone ms nurse who told me to keep calm, and to write down the symptoms, i did calm down and am ok now but i phone a family member to come stay with me for the afternoon i was shakey and shivery for the rest of the day and very week maybe shock of it not sure, i feel its just made me a little scared to inject alone again is there anything anyone can say to reasure me on this and my ms nurse said to keep doing it and see neurologist next week, im going for my yearly check, and am not surer what to expect thanks guys, i know im what they call ok but it seems to have made me really edgy again and very weapy, i dont like being down i like to be the happy one xxx
I’ve been on copaxone for nearly 3 years and have had this reaction quite a few times. I agree it is absolutely terrifying while it’s happening and does leave me feeling shakey for the rest of the day… Whenever I’ve mentioned it to ms nurse and neuro am just told that it’s just one of these things and the actual reaction will pass within 30 mins (which it does but that doesn’t make it any less unpleasant and frightening). I did stop briefly last year for about a month but ended up having a relapse so am back on it - other DMDs are not suitable for me.
I try to have someone with me when injecting for first few times after each reaction - just to get my confidence back…
Don’t know if it’s any help but when it’s happening I just try to sit back and relax (I did say try!) and keep repeating to myself ‘this will pass’, and it does - for me the acute reaction has never lasted more than about 10 mins and it’s anxiety that seems to prolong it.
I was kind of settled and really had confidence in so feel a little apprehensive about what they would offer me next i had rebif before this and that just made me ill not sure what im hoping for teally xx Thank you so much for replying i am really scared xxx
I think this is the reaction the leaflet warns you about. I have never had it that bad - just three times (maybe four) when it feels like I have stopped breathing and my face is flushed, and then it starts to fade away after a few seonds, and it’s gone within a minute. Each time, I wonder if it will be a big bad reaction - but so far, so good.
Have you thought of phoning the Copaxone Connections helpline - 0800 056 1676 ?
Hi what a scary time for you with your copaxone, I’ve been on my copaxone since October last year, I was told about this reaction, when my MS nurse came here to teach me how to inject, she told me at that time for me never to inject if I’m by myself in the house, as within about 30 minutes if a reaction was too happen it will do then she did tell me not everyone gets any reaction might get it once might happen after every injection, but fingers crossed I’ve never had this type of reaction, I get the site reaction evertime I inject now I’m full of lumps just under the skin before I inject I have to check for lumps as she did tell me not to inject into a lump or a stretch marks.
Ask someone to sit with you for about 30 minutes after you have used your copaxone.
You might not get another reaction, but it’s better to be after than sorry.
Thanks evetyone i am hoping because of how ive been they say to stay with copaxone really x and hope that if it happens again i have someone with me i do know i am still here in one peace i know a little shaken and knocked back by it but ok. I do know when i see neuro in the morning im gunna have to tell him everything how im feeling so down in the dumps it doesnt take much to upset me at yhe moment am sure like all you fighters out there ill be my happy go lucky self again xx thanks sami xxx
just to let you all know staying on copaxone going to keep trying as whilst ive been on it i havnt had any bad relapses and thats really good so thank you and hopefully i wont have any more reactions like that one again xx
i had this happen to me two times last month. its not nice at all.
ive just saw my neuro and ms nurse today and told them about it. ms nurse said it does happen with some people now and then. dont worry and keep calm and it will pass which it did but still had be a bit worried at the time.