Have finally seen my ms nurse after symtems started February and eventually diagnosed in June. Have been given 2 options to think about with dmds. Tysabri and fingolimod . Obv with the tysabri I have to wait for the blood test to come back before I decide. I have read the side effects and must admit I am worried about both. Has anyone taken either of these? Do u recommend either or would u just put up with the relapses and have steroids when they happen. Need advice?? Thanks Jakki
I’ve been on tysabri for 10 months and I love it! The risk of PML is a small one, especially for the first 2 years but I see my ms nurse/neuro alternately every 3 months so feel closely monitored. I’ve been relapse free for 12 months so far and feel like I’m back to the old “me” again. I’ve heard good things about fingolimod - it would be my next choice if I ever had to come off tysabrii. Hopefully someone with experience of this will be along soon. My neuro said it “puts a handbrake” on the ms and will hopefully stop or slow down any progression. It’s a very personal choice though - check out the msdecisions website, there’s some good info on there. Good luck!
Thankyou you have put my mind at rest a bit. I was swaying to that option as long as blood test comes back I can. Jakki
Hi,
I was wondering if you dont mind me asking if you are being offered fingolimod before trying one of the interferons? I am in a very similar position to you but my neuro is offering Interferons or Tysabri, as he is saying I can only have fingolmid if i dont get one with the interferons?
Very greatful if anyone else has been able to go straight to Fongolimod
Thanks
Will only give me the fingolimod if my blood test shows the likely hood of the JC virus so can’t take tysabri but needs a licence for it and they need to apply so may not be given it anyway. Don’t really understand any of it tbh.