Tysabri or Gilenya

Hi everyone, I’m really need some advice cos I have no idea what to do anymore. I have had very active RRMS for a number years. I was on Tysabri from 2008 to 2010 and then stopped partly due to the PML thing. I then went on Rebif but I started to relapse badly again after a year or so. I went back on Tysabri in 2012 and am about to have my 10th infusion. This time I know that I am JC virus positive. I was at the docs last week and he has suggested I stop Tysabri and take Gilenya. He has not firmly advised either direction and has left the decision to me. He did say that the latest research the risks for someone in my position there is now a 1 in 200 risk of PML, increasing to this level as time passes. Also, I think you need to have quite a break between stopping and starting the two drugs (3 months?). I am totally confused at what to do. Tysabri is a brilliant drug but the risks are so scary… on the other hand I don’t think I can handle anymore MS damage…on the other hand I have two young children…aaaagh. Sorry for the long rant but I am really at a loss here. Is there anyone in the same situation who has any experience or advice. Thanks x

I’m not in the same situation but may be in the future. I’m on Tysabri and negative for the JC virus, presently but who knows how long this will be true (and have youngish children too). From what I understand, Gilenya is not as good as Tysabri but still a lot better than nothing - I think the figures are average reduction in accumulated disability of 50% for Gilenya and 66% for Tysabri (reduction in relapse rate about the same).

If I was in your position, I would go onto Gilenya but really you have to decide about this. The health authority here won’t fund Gilenya so presently not a choice for me. The other thing you should know is that you will be in danger of bad ‘rebound’ relapses unless you go straight from the Tysabri to Gilenya - don’t have the three month clear out period. If you want to see the research on this it’s here

and the stuff about rebound relapses is here

This may make your decision harder (sorry if it does) but it’s really important to have as much info as you can get.

Hi Thanks so much for the information. I’ll have a look at the links. I’m not 100% sure about the break length between the two drugs. I have been speaking to a girl I used to meet for Tysabri infusions with in York (I’m back home in Scotland). She is changing over to Gilenya and has been advised to take a 3 month break. Having said that, when I mentioned it to my neuro he looked confused and then checked it up in a book and then just kinda nodded. Suppose that’s not the most comforting reaction. I’m thinking the break is needed because Gilenya strips your immune system and since Tysabri hangs about for a while it could be dangerous. On top of that it looks like Gilenya comes with its very own set of risks. On the plus side he did talk about a few new drugs that are meant to be coming out over the next yr or two. They are in the process of being approved in the US. Lets hope you can stay on Tysabri long enough for them as he was really positive about them. I guess I will make my mind up at some point. I have been playing with the idea of staying on T until my next appointment in Nov. By then I will only be at about 18 infusions so not too bad. Thanks so much again. It’s amazing how we can get ourselves so twisted up with all the information and decisions. X