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DMD's - the honest truth!!

Hi everyone, Well as you know I’m thinking of what DMD’s to go on and I’ve read up on everything (read up on them all months ago and re-read everything again) and I’m aware of the side effects for each one but what I really want to hear is first hand experiences of each drug from people that have actually used them! It’s all well and go the consultants and nurse telling you one thing but its actually, in my opinion, better to hear it from people who actually know - people who are on the drugs or have tried he drugs and what their own experiences of them where. So these are the drugs I’ve been offered: avonex, rebif, betaferon, copaxone and then also tysabri. I know the side effects of each and the risks of each. What I really want to know are how have people found the side effects and how long they find they usually last for. This was originally why I was thinking of tysabri because as far as I can see it was the one with the flu like symptoms being minimal (lasting maybe an hour or so) and the infusion being only once a month so won’t interfere with my work etc Would be so grateful for any replies!

Hi karina I’ve been on avonex since last September and was worried about side effects and to date only things ivd noticed are headaches and site injection swelling and bruising so guess I’ve been lucky!..but long term who knows?!..think tysabri has the most risks with something called pml ( maybe its not that not sure!) but they test you before you get it…good thing about avonex is its only once a week and apparently all the interferons have the same result with reducing relapse rates!..good luck on whatever you decide…Emma x

Thanks Emma - having a bit of a dilema on which drug to choose! Grrrr!

Hi Karina, I have been on avonex for 11 weeks now, the first two weeks were worse for side effects, I woke up in the night sweating thought it was early menopause! I have continued with it and side effects are now non existant, there is the odd bruise now and then from injection but no swelling or site reaction. As it’s only once a week I don’t feel it takes over my life at all, quick jab on a monday evening and all done for another week. You will have bloods tested, Liver function test as Avonex can sometimes cause problems with it but obviously not with everyone. Hopefully others will reply with info of their experiences but if you haven’t already then post in Everyday Living forum too as there might be more people using that who are on DMD’s, Ruth

Hi Ruth, Yeah I posted in everyday living too and got a fair few responses but I also thought it maybe useful to post in here so that newbies could see the decision process for themselves too. Not a newbie myself as such but a newbie to deciding on meds and harder than I thought!

So difficult to decide on your own although my MS Nurse recommended Avonex as it was only a weekly injection. I don’t think I could fit in a daily injection and getting a toddler sorted every day.

This link is a review that was done recently testing the long-term effectivness of all dmd’s - might help you reach a decision:

http://www.mstrust.org.uk/research/updates/articles/update130612.jsp#item01

Thanks for that