Hi All I am seeing my neuroglist in February and I know from my talks with my nurse he will start to talk to me about DMD’s as I now qualify to receive them. After reading the booklet my nurse gave me I really do not like the sound of the side effects. My question is which ones are you all on what side effects did you have and how you coped with them and did the side effects reseed over time. Many thanks for all of your help so I can see my neurologist with some information of my own. x
Hi I have been diagnosed since 2009. During that time I have been on two trial drugs.(big mistake - lowered my immune system too much and ended up with countless infections and side effects) Last year and a half I have been on copaxone. the only side effects I get from this is so injection site pain and occasional bumps, which disappear after a day or two. Not sure how effective is is. I think I have had a few relapses, but touch wood, they are manageable and sensory ones. It is a nuisance injecting everyday, but I prefer that than flu like symptoms, I can get on with life, I work, have a child and travel quite a bit. Not had any trouble taking injections abroad. I have two friends who are on Tysabri, they swear by this too. They have a couple of days per month around infusion time when they feel offside, but otherwise they are doing really well. Good Luck X
It all depends on you, Hopeful.
You may react to any of the DMDs, or none of them - and you won’t know until you start. You pick one that suits you and hope it is the right one.
I went for Copaxone bcause of the daily injection (figured it would be easier to build into a daily routine), with the lack of flu-like symptoms a secondary factor. 2.5 years later I have no real cause to regret the decision. The injection site reactions got less and less over the first six months, and I don’t even get any now.
You may be different.
Just remember that all the first-line DMDs are about equally effective in reducing relapses, so it really is your call on what to go for.
Geoff
Hiya
Geoff is right (and very wise). Please don’t be scared about DMD’s and their side effects. You might not get them! I started off on Rebif and didn’t have any side effects at all. Unfortunately it stopped working for me (after a few years) so I had to change and I went on Copaxone. I found the site reactions from Copaxone horrible and really struggled with it at first BUT I’m glad I stuck with it as it works really well for me. It just took a while for my body to get used to it and settle down. The important thing is that it did settle down and it works so was well worth going through the rough (ish) bit at the start.
Have a look at the msdecisions website, that can help you decide which might fit into your lifestyle better.
Also remember that the leaflets have to list ALL of the POSSIBLE side effects. It’s not a list of what you will experience, just what some people have experienced…that doesn’t mean you will.
Good luck
Sue
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