I have just been taken off Rebif and my neurologist told me I could choose between Copaxone and Gilenya.
I’m finding this a really difficult decision and I was wondering if any of you had experienced either if you could tell me what it’s like? I’m particurly concerned about side effects and site reactions.
Copaxone has negligible side effects for most people, but it does cause redness, possible bruising and possible lumps at injection sites.
Gilenya is a pill so no injection site problems at all. The main problem with Gilenya that I know of is that you need to be monitored for a short time in the beginning to make sure that it doesn’t affect your heart.
You can look at the side effects of everything on www.drugs.com. It’s a very reliable source of info.
You might want to consider how effective they are too though? (Gilenya gets better results in terms of reducing relapses and progression than Copaxone.)
I started copaxone in may,I do get lumps,redness and bruising,but its nothing I cant live with.
There are 8 sites you can inject into and each of those sites has 3 places so there is plenty to rotate round.
I do find the reactions are less in the fat bits. I dont know if you are skinny or not but I guess if you do react it may be worse if you are.
I guess its very much like the choosing your DMD the first time, all you can do is do your reasearch and follow your gut reaction.
I wish you well whatever you choose.
My friend used Copaxone for years and it worked really well for her. Her problem was when it was deemed her MS moved into Secondary MS, as Copaxone isn’t licensed for this, she was taken off it and has become really ill since she’s not taking it any more! So unless Copaxone gets its license for Secondary MS anytime soon, you need to bear that in mind.
My other friend was asked to choose a DMD and asked her neurologist, if he was in her position, which drug he’d choose. He wasn’t happy about being asked this, but as she pointed out, she hadn’t had his years of medical training, so she wanted to know which DMD he’d choose? After some time he eventually gave his answer “I wouldn’t take any of them…” so she said neither would will I then!
And that is a choice they often forget to tell us - you don’t HAVE to take DMDs at all. When they first came out you had to be “ill enough” to take them! Now it’s the fashion to put everybody on them immediately. They helped my first friend but have harmed others so take your time and don’t feel pressured into a choice!
i’ve been on copaxone siince january 2009 and apart from a few site reactions it has been fine.
however i’m feeling much worse now and i’m wondering if i need to change to another dmd
i see my consultant on monday so i’ll be watching this thread