Last reply 7 years ago
I havent a clue which DMD to choose!???? :(

hey,My neurologist reckons I should now start DMDs,I instantly wanted to go for Copaxone as Ive had alot of trouble with my mood in the past as that was the only one that didnt have side effects of mood changes but my neurologist said I cant take it cos Ive been getting palpitations which is being

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sara123
7 years ago

investigated.Now,…. I just dont know what to do and which one to go for.can anyone help?I want real views on the side effects of treatment and Im just really scared about my mood,I feel calm and happy and dont want to wreck that. Ive got AVONEX, BETAFERON,EXTAVIA and REBIF to choose from. even with all these Im worried about the ‘flu like symptoms’as side effect.Is it really bad??cos I got 2 young babies and cant be feeling unwell everytime I inject.sorry long msg,i i kno! thanks,xxx


stumbler
7 years ago

Sara, have you looked through this website?
http://www.msdecisions.org.uk/


sara123
7 years ago

yeah, but I dont find it too helpful,just cant make my mind up.really worried how il cope with the side effects…:( xx


t
7 years ago

Hi Sara,
I can only offer you my experience of Rebif. I had the flu-like symptoms for around 5-6 months from starting (I’ve now been on it for three years).

Now, I’m absolutely fine and don’t get any side effects at all. When I first started, I’d get the flu-like symptoms (muscle aches, chills, fever, generally feeling unwell) for about 12-14 hours afterwards and then they would disappear. I was told that paracetmol would help but avoided taking that and just put up with it, however, if you have young kids and then it would be an option to make things easier.

What I found really helped was taking the injection at night, which meant I would sleep through most of the side effects. Everyone I spoke to said the same thing.

In terms of needles, the Rebif needle is small and also comes with an auto-injector (I have done it both ways) and apart from some bruising (I bruise easily anyway) I’ve not had any problems with injection site reactions.

Hope that helps! Let me know if you need any more info!
x


daisy
7 years ago

Hi Sara,
Just to put my two penneth in, I was on Avonex for a year but have just decided to come off it. I’ve been in bed with the flu-like side effects (aching limbs, massive headache, fever, chills) for two days a week every week. I tried everything to help, taking ibuprofen, trying to sleep through the worst of it etc but it just wasn’t getting any better. It also affected my mood and made me feel really down which is just not like me at all. I’m now looking at Copaxone which I’m told is the only real alternative if the interferons don’t agree with you. It’s a really hard decision to make, please do feel free to email me if you need to chat xx


edw
7 years ago

diagnosed march 09 and been on copaxone since aug 09. Once you get used to doing the injections it fine. i sometimes get lumps or bumps but not all the time and i find i can lead a normal life and forget about it. i do the injections before bed or before i go out if i have something special on- just wait a few minutes afterwards before rushing about as a few times i;ve given myself really dizzy soells by injecting and running out the door! My nurse has been really helpful too


edw
7 years ago

diagnosed march 09 and been on copaxone since aug 09. Once you get used to doing the injections it fine. i sometimes get lumps or bumps but not all the time and i find i can lead a normal life and forget about it. i do the injections before bed or before i go out if i have something special on- just wait a few minutes afterwards before rushing about as a few times i;ve given myself really dizzy soells by injecting and running out the door! My nurse has been really helpful too


edw
7 years ago

diagnosed march 09 and been on copaxone since aug 09. Once you get used to doing the injections it fine. i sometimes get lumps or bumps but not all the time and i find i can lead a normal life and forget about it. i do the injections before bed or before i go out if i have something special on- just wait a few minutes afterwards before rushing about as a few times i;ve given myself really dizzy soells by injecting and running out the door! My nurse has been really helpful too


cariad
7 years ago

Hey Sara,

I’ve been on rebif since july on this year-did a 3 month course of the 22’s and am now on the 44 dose. I reacted badly after my very first injection (fever, vomiting, shaking, aching arms and legs,killer headache etc) but it was a one off. Since then, I find I suffer from headaches more than I used to but other than that, I don’t suffer with any side effects. You get used to injecting yourself very quickly and like already mentioned, I tend to inject just before bed and sleep off any uuurgh feeling haha. Again, I took paracetamol when I first started but now try to avoid it where I can-at least then, you know what you’re genuinely feeling…Hope this helps, msg me if you have any other questions. x

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