Hi all,
Hope everyone’s as well as possible.
This is my first new thread, so apologies if it’s not quite right - is anyone on a clinical trial for this or being offered it?
Thanks
Jo x
I am not aware of a clinical trial and thought that was the problem. The Barts Blog has covered this subject a few times.
“We tried to get NHS England to let us use rituximab in the NHS and they said no. The reason was that rituximab was not licensed for treating MS”.
http://multiple-sclerosis-research.blogspot.com/2016/10/clinicspeak-offlabel-ritiuximab-in.html
Hi Whammel, glad to see your post, I’ve not seen anything from you in a while.
I did see that post at the time, it just seems to be the same story time and again - there’s something that might help, but you won’t get it (on the NHS at least).
If anyone’s interested, there’s a closed group on FB for this - “Rituxan for MS” - but I’ve only just joined, so far it looks like it’s all people from the US, but we shall see.
Jo x
Just been reading on wiki and Ocrelizumab is listed as a drug that works in a similar way - now that is being trialled
Sonia x
Yes, I know. But rituximab is FDA approved NOW. You can get it NOW. If you check out the Barts blog, Prof G’s opinion (and I think he’s probably right), is IF Ocreluzimab is approved by NICE, we will a) have to wait two years for it, and b) if it gets approved for PPMS at all, it is likely to be prescribed for an upper age limit of 50/55 (I’m 51 now) and an upper EDSS limit of 5.5 (I’m 6.5 now) - and there’s more - see the third paragraph in his post here:
http://multiple-sclerosis-research.blogspot.com/2016/12/neurospeak-casestudy-personalised.html
Reading between the lines, I’m even unlikely to get on a clinical trial, despite that carrot being dangled. So the chances of me getting it prescribed when I’ve had another two years to deteriorate (and I’ve gone from EDSS 4.5 to 6.5 in less than 3 years) and am two years older are pretty much nil.
I don’t want to hang around waiting on a probable “no”, I want some action now, before it really is too late for me.
Lots of pwMS are getting Rituximab in the US, why aren’t we being offered it here???
Jo