Hi, looking for some experience if anyone is taking this please? After 12 months on Copaxone I have had 4 relapses including my second bout of optic neuritis. My MRI shows several new lesions on brain plus lesions on spine which I did not have on previously. The Consultant now wants me to change to Fingolimod but the risks look scary! I have had no side effects with copaxone but hell on earth with pregablin and dont want to end up like that again. Any advice would be much appreciated. Thank you in advance!
Hi I started on fingolimod in January 2017, this is my 4th DMD. I was previously on Copaxone & was getting pain at my injection sites, especially on my arms. I haven’t had any side effects at all. My neurologist & nurse seem happy for me to continue on this. Good luck Annie x
If you’ve not already seen it, have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid
While it definitely seems that Copaxone has stopped working for you, there are other options apart from Gilenya/Fingolimod.
Why not have a look at Tecfidera? It’s another oral therapy like Gilenya, but doesn’t have quite the same number of potential side effects. Or you could consider asking about Ocrevus. It’s a completely different drug, taken by 6 monthly infusions and appears to not only have a very good relapse reduction rate, but also a shorter list of possible side effects.
Don’t forget, you have the right to choose what drugs you take. It may be that there is no treatment centre set up in your area for Ocrevus, but you should be given the choice of more than one drug.
Thank you both for your replies. Good to hear no side effects for you Annie, I hope I have the same result. I have been advised not to take Tecfidera as I have a gastric ulcer due to taking long term anti-inflammatory medications on prescription prior o diagnosis of MS. My Consutlant has not offered me anything else, he says his advice is to give it a go! I think I will look into the other options too for my area. Thank you for the signpost to Ocrevus, I had not heard of this one before and will ask the MS Nurse about this one too. Thank you for the support both of you, it means a lot to know when you come on this site your not on your own with things and there are lots of lovely people that understand it much better than I do! Lou xx
Hi Lou I meant to add, I saw my nurse recently & was asking about fingolimod, she said that generally, it is very well tolerated. Also, I remembered earlier that I was previously on Tecfidera but had to stop as my lymphocytes were getting too low. Prior to that, Copaxone with pain at injection sites & prior to that, Avonex but constantly felt sick so had to stop. I don’t post on the forum very often but I love the fact that it’s there when I need it, good to talk to others who know what you’re dealing with & can give advice based on their experiences. Family & friends are great and they try to understand but the only people who really understand are the people on this forum. I wish you well Lou, in whatever you decide. Annie xx
Thank fo your reply, I couldn’t agree more about this forum!
I have only had Copaxone so far and had no reaction at all, really lucky with it i think, hence the reluctance to change, however I understand I need something stronger to try and tame the MonSter a bit.
I spoken to my nurse who thinks like the consultant I should “give it a go” in term of the fingolimod so I have to have the tests and ECG now to see if I OK to give it a whirl! Fingers crossed.
All the best to you Annie too xx