Hi im fairly new to the forum, ive has rrms for 14 years, my latest treatment is tysabri,about to have infusion 67 and just found out today that im jc virus positive. I have been asked to consider other treatments does anyone have any advice they could give me please many thanks x
how about tecfidera?
i think it’s made by the same company as tysabri.
2 tablets a day, easy peasy!
Hi, just want to welcome you.
I dont use dmds, but think you do need to consider changing, due to the jc thingy.
I’ve just changed (well, three weeks ago) to Gilenya. This is the next most effective dmd, after Tysabri. I’m good on it so far.
Thank you all ive been told i can get Gilenya, Tecfidera,or the infusion Lemtrada so much to take in all advice is so appriciated x
As you’ve been on Tysabri, you (hopefully) have been mostly relapse free, or with milder relapses than without the drug, so you have no idea how active your MS is likely to be without the Tysabri.
People advised to have Lemtrada usually have quite active MS, with lots of relapses. If you try one of the oral therapies (Tecfidera or Gilenya) and find you’re still having relapses, you could then make the decision to go on Lemtrada. But it is a really heavy duty drug with lots of potential side effects so I’d think very carefully and do lots of research before going on it.
One thing you should check into is how much time you have between Tysabri infusions and starting whatever other DMD you go for. It appears that many people have experienced relapses after coming off Tysabri, like a rebound type of thing. So get some advice from the clinic nurses about how best to swap drugs to avoid problems.
Thank you sue great advice, my consultant wants to do the switch over with in 4 weeks of last tysabri, we’ll keep up the reaserch thanks again x
I am on Tysabri and I’m JC positive. I chose it as I didn’t like the side effects of the other drugs. I have a 1 in 900 chance of PML so I’ll take that chance. Please make sure you get good advice and make an informed decision before switching.
I wish you all the best x
Hi pops my risk is now 1/164 we’ve be going through all the treatments and the side effects on all look very bad. I know may time on tysabri has to come to an end soon but onto what at the moment i dont know, its helped having everyones advice many thanks