Hi recently diagnosed with MS And have the choice of Tysabri or Ocrevus, My neuologist said Tysabri will be faster acting and more effective but worried about Risk of PML, assuming l am JCV negative is the risk of PML so small theres no need to worry or do you think l should go with Ocrevus to be safe , but then it might not be as effective against the MS as Tysabri, what are your opinions.? l think l read the longer you are on tysabri the more the risk, what about going on tysabi for a couple of years and then switching to ocrevus , is that a good idea
The Barts Tysabri risk guide is worth reading.
l read BArts risk guide, as long as you remain JCV negative the risk is 1 in 10,000 but what is scarey is if you become JCV positive and on Tysabri for 72 months the risk is 1 in 167 . l would have regular tests for JCV, but if l am on ocrevus l dont have to worry about it
IMO If you’re JC negative Tysabri wins, no question. It’s a much trickier decision if you’re JC positive and I do not know what I would do then. I would be looking to my neurologist for a steer, that’s for sure.
thanks yes l get my results back soon for JC, if lm positive my neurologist said to go with ocverus, would that be almost as effective as tysabri against MS
My results very recently came back low positive for JCV but because I had been previously on immunosuppressants for IBD the risk is too high so most likely looking at Ocrevus or Kesimpta. However if I had been negative, I most definitely would have gone with Tysabri as a first choice.
If you have ibd it’s unlikely you will be given an anti cd20 , be good to know what your neurologist says
Hi Shay1, followed your post previously on your journey and pleased you got the Tysabri!
The Neurologist did offer the 2 that are detrimental to IBD as he thinks the MS is the more important to treat and the Gastro is more likely to be able to put me together if it goes wrong.
However, he has been back and forth with Gastroenterologist over the drugs as Ozanimod is one that works for both but not funded in the UK for MS but funded for IBD. Unfortunately for me, the Gastroenterologist will not play ball unless I relapse, has taken me off Adalimumab and Azathioprine and adopting a wait and see attitude
Meantime all this has caused delays with my starting treatment and I feel very stressed at the moment.
That sounds very stressful indeed. I hope that you reach a satisfactory resolution - without first having had to endure a relapse of either condition.
Fingers crossed for nothing permanent, did have a 10 day MS hug so MS nurses sorted the medicine meeting appointment and the IBD is wavering but not what I’d class as a proper relapse but close
Have you had your jcv results back yet ?
Wait and see approach is wrong in my opinion (not that it means much ) why try to fix something that could be prevented in the first place, it’s your body & your life , hope they get things sorted asap for you , if you can get their secretary’s emails send them your concerns this might get things moving along faster
Good luck
yes l got JCV negative results so lm going with tysabri , start first infusion in a week
Awesome , I thought I was having infusion turned out to be the injections, all good so far weirdly I look forward to it now
I’m Superstitious and can’t leave my last comment being the 13th
Good luck
Hi so I’ve been on Tysabri for over 3 years and I’ve just found out on Monday eve that I’m Jc positive…… do I be worried or am I over thinking things ??
Your neurologist will discuss this with you, depending on how high the results are you might be able to stay on tysabri and do the 6 week interval dosing instead of 4
You could switch to OCrevus, from what l read its just as effective as Tysabri , but you need to talk to your neurologist, only he can tell you what you should do