ANYONE ON OCRELIZUMAB
Try the facebook page.
Anyone even heard anything about being prescribed it yet? Particularly for progressive MS? (I am in that FB group, and there doesn’t seem to anyone from the UK even having the conversation yet)
I had a discussion about this drug with my neuro last week. It’s not licensed yet in this country, expected middle of 2018. I think there are some trials but I’m not eligible. You may struggle to find many taking it.
It’s not licenced anywhere yet, it’s listed for FDA approval on 27th December.
This was in the Barts Blog in June 16 and looks like a more reliable guess.
“You may have heard already that Roche have finally submitted their RRMS and PPMS dossiers in relation to ocrelizumab to the FDA and EMA (see today’s press release below). Ocrelizumab illustrates how long the drug development process takes. The PPMS ocrelizumab results were made public last year at ECTRIMS and the dossier has only just been submitted approximately 9 months later. The FDA has fast-tracked ocrelizumab so PPMSers in the US should get an answer within 6 months. In Europe the EMA will take up to 12 months and then NICE will have to look at its cos-effectiveness, which typically takes 6-12 months and then post-NICE there is a 3 month delay before NHS England allows us to use it. So in the UK anyone with PPMS hoping to be started on ocrelizumab may have to wait another 2 years, that is assuming is clears all the regulatory and access hurdles. The red tape is unbelievable and then you ask us why academics don’t develop drugs?”
http://multiple-sclerosis-research.blogspot.com/2016/06/newsspeak-ocrelizumab-applications.html
Hi Everyone,
this is a really big deal for Progressives who have nothing but tea and sympathy so far. I am very worried by the deafening silence over Ocrelizumab/Ocrevus. We should all be talking to the Neuros about this, let THEM know WE know what’s coming. Assuming it is approved the medics will have to get used to the idea that there is now something they can do for Progressives.
Cheers,
Dave.
I asked my neuro about this in August, he said he’s been wrong before, so wouldn’t pass comment x
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If approved in the USA in December, it may be possible to get the drug privately. It’s been trialled here for two years already, so it must be available.
It was my Neuro that told me about it when I saw her in October. Only dxd May 2015, seeing me at regular 3/4 month intervals and seeing the rapid deterioration in my mobility, she confirmed what I had suspected. Not RRMS as thought, but PPMS. Asking her to allow me to remain on Tecfidera, “even though there is nothing to help PPMS”, agreeing to continue prescribing Tec she told me that Ocrelizumab/Ocrevus was well on the way to being approved. Asking if this would be light years away from actually being on the market, she told me no, it could be as soon as “sometime next year”. I live in the Irish Republic and am waiting and hoping…!
The problem with getting the drug privately is the cost - I haven’t found any reliable price, as apparently the drug company don’t release the price until it’s approved and available…
Jo
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