Hi
My MS consultant has advised that I need to go onto “stronger drugs” , previously on Aubagio and he talked over a few but the two in the shortlist is ocrelizumab and tysabri. From the research that I have seen that ocrelizumab is the potentially safer drug to use, and is what I am siding towards. The consultant has sent my bloods to get tested for the JC virus and am my next appt is next month.
Just wanted to check is my thoughts on the ocrelizumab vs tysabri correct?
Thanks
Ciaran
Hello Ciaran
In my personal view, Tysabri is a better drug than Ocrevus (trade name for Ocrelizumab).
If you look at MS Decisions aid | MS Trust you can compare the two drugs. Ocrevus has an average 50% relapse reduction rate in RRMS while Tysabri has an average 70% relapse reduction rate.
Yes, there is the possibility that you could develop PML, but only after 2 years on Tysabri, and then only if you are JCV positive.
Both drugs have the possibility of side effects apart from PML. But in general, most people don’t have terrible side effects on Tysabri. And you are carefully monitored on both drugs, so side effects would be picked up fairly quickly.
Why not wait until you get the results of the JCV test and make a decision then? The scientists have made further advances with JCV testing, so they can isolate people who are more and less likely to develop PML.
(By the way, I started on Tysabri about 5 years ago. I was unlucky and did have side effects - elevated liver function tests - but I still think it’s a good drug!)
Best of luck making your choice of drug. Don’t forget, if something doesn’t suit you, you should be able to change to a different drug. Ask your neurologist or MS nurse for their opinions and also ask your family and / or friends to look at both drugs and see what they think.
Sue
Its worthwhile pointing out that ocrevus has a 50% reduction in relapse rate compared to betaferon whereas tysabri’s reduction rate of 70% is compared to placebo.
many thanks Sue for you reply. I am still undecided but my mother has spoken to someone else who has MS and they advised about the risk of PML and told my mother to tell me to stay well clear of the Tysabri. So getting pressure to stay away from Tysabri, but I am open to looking at both.
I will look at your link carefully
Thanks
Ciaran
I agree with Sue that you should wait for the results of your JC virus test and take it from there.
For my part, I have been on Tysabri for a good few years now and it has been a wonder drug for me. I love Tysabri, and would recommend it without hesitation to someone who has tested negative for the JC virus. However, if I were in your shoes and JC+, I would have to think a bit before starting Tysabri, particularly if there was a half-way decent alternative available (and it sounds as though there is in your case). It would be a much tougher decision, that’s for sure.
I hope that you and your neurologist can arrive at something that really suits you.
Alison
Hi Ciaran My MS nurse called Tysabri the “Rolls Royce” of DMDs - and it is - there is nothing better out there! I’ve been on it for more than 7 years without a single relapse. Yes, there is a SLIGHT risk of PML if you’re JC+ but this is closely monitored. If I became JC+, I would choose to stay on it - to my mind, the benefits far out way the risks. Emma x
I tend to agree =)
Considering that I am also on Tysabri for 9 month now (and I freaking love it) the only relevant question in this perspective is how to stay away from JCV? According to wiki 70-90% of population have it.