Hi all went back saw Neuro doc yesterday and he told us husband not suitable now for ocrevus he reckons damage that done is irreversible and it won’t help him getting it. I’m so confused as in April he said fitted the criteria and he edds 7 now in wheelchair! Also he doesn’t think hsct will help and as he had pneumonia twice it a high risk to take any help please
NICE made the announcement at the end of June that Ocrevus was not going to be given the OK for PPMS. And it seems that even if they changed that decision (the consutation period isn’t final yet), it would in any case only be given to people with ‘early stage PPMS’. By this they mean a combination of time and EDSS score. If your husband is now at 7 on the EDSS, he wouldn’t qualify for Ocrevus even if NICE changed their decision.
This is the link to the NICE decision: https://www.nice.org.uk/guidance/GID-TA10153/documents/appraisal-consultation-document
Obviously this is bad news for you. I am sorry. I don’t think your neurologist can be blamed, the situation was slightly different in April before this announcement by NICE.
So to hear your husband doesnt qualify l hope things will change for you and you are given the chance to at least try ocrevus
I’m not giving up on this if his edds was lower he would get it so because gp kept dismissing his symptoms they saying they won’t try well I looking at all options here anything to stop him getting worse so I’m starting by emailing every doctor under the sun who does hsct or anything other trials there must be something any advice is most appreciated thank you
From what I have read it has some very nasty side effects.
I would try biotin first as it is quite harmless according to my GP and I have had some amazing results with it.