Neurologists today gave options Ocrelizumab and Natalizumab anyone had any experience with these they can share? Thanks
i know natalizumab as tysabri.
i know nothing about ocrelizumab but i googled it.
never had either of these myself.
they are both by infusion.
tysabri is for highly active RRMS
ocrelizumab can be used for both RRMS and PPMS.
weigh up the pros - reduction in future relapses
and cons - side effects, time in hospital.
Hi Leeroy1, I had a similar question afew weeks ago as I’m going to be started on tysabri (natalizumab) in September. I received so much positive feedback on the tysabri and although I had my concerns about this DMD my mind has been so far put at ease! Alot of people said it has very mild to no side effects and although there is the jc virus to be taken into account whilst on it I have been assured that this is checked for regular so to makesure any chance of PML can be detected immediately! I’m afraid I have no further advice than that and all I can say is I’m actually looking forward to starting tysabri as I hope it prevents me from having anymore relapse’s ( I’ve had 3 this year so tecfidera really wasn’t working for me). Good luck with whatever you choose! Laura
Thanks Laura, I read up on Tysabri and yes the JC virus is an issue. Kind of put me off. Knowing my luck!!! Thanks for your response it’s much appreciated and good luck
Thanks Carole much appreciated
PML, which is the very nasty virus that could be contracted by someone on Tysabri doesn’t strike unless the person has the antibodies to the JC (John Cunningham) Virus. This is a very common virus that you just wouldn’t know you’d come into contact with. However, before you start on Tysabri, your JCV status is checked and again very regularly throughout your time on Tysabri. They have refined the blood test for JCV now so can see whether you are highly at risk of PML (if JCV+) or only mildly. You then have the option to come off the drug, or indeed whether to start taking it at all. Plus, the chance of PML is very very low for the first 2 years on Tysabri.
So it’s perhaps worth getting the JCV test done and make your final decision as to which drug to opt for after that.
All drugs do of course have potential side effects and in fact I had to stop Tysabri because of elevated liver function tests (which are also checked every month). So it’s always worth balancing the potential risks against the possible relapse reduction.
Personally, I’d opt for Tysabri over Ocrevus, simply because the relapse reduction is likely to be better and the potential for side effects lower on Tysabri. But basically, it’s a choice you need to make with the help of your neurologist and MS nurse, possibly after you’ve had your JCV test.
Best of luck with whatever drug you decide upon.
Many thanks Sue much appreciated