@DominicS 

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DominicS

Ocreluzimab (Ocrevus) - UK experiences

Hello, Is there anyone on here that has started their treatment in the UK? I see that some Americans have. I am interested to know the approach taken by UK Neuros. I haven't got it yet but I am going to see a neuro later this month with a view to having it Rx for me. I dream of not being tied to as many pills (Dimethyl fumurate - Tecfidera). Additionally, if your UK neuro decided to do it, why do you think she/he chose that for you? Did they or did you go in with an agenda? This was recommended to me by a neuro some 12 months ago before it was licensed so I am keen on that basis. Thank you. Best, Dominic
@Stumbler

@dominics , Ocrevus has only recently been approved for use in the UK. So experience will be in short supply. I wouldn't like to guess why Neuros recommend specific Disease Modifying Therapies (DMTs). We just have to trust that they're working in our best interests. But, if you can make a strong case for a DMT, then it may be considered. The following comparison tool may help :- https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

@DominicS

@stumbler I am well aware that it is a neophyte in treatment terms. I do know that a few people on here are in the frame for it. The centre I attend has completed all the necessary paperwoprk for a high-cost drug and there is a requirement that they need to be ready to go within (I think) 3 months, maybe 6. I am already on a DMT, I have read the NICE Rx guidance and can argue the toss on Qualy data. I am interested in hearing from people why their neuro chose it or recommended it, in contrast to whether they approached the neuro asking for it specifically. I wonder what the 'shape' of those conversations has been. I know that if I can't get it local I can get it in London, it is just a complete fag having to drag myself into Town every 6 months. I try to avoid going there these days as I am no spring chicken. Been there: done that. I have decided it is what I would like to take as I am just fighting to stay ahead of this wretched disease. In the last 25y I have had steroids, beta-interferon (Rebif), glatiramer acetate (Copaxone) and dimethyl fumurate (Tecfidera) as well as high dose cholecalciferol (vit-D) and modafinil (Provigil in the USA). The clock is ticking regarding the efficacy of treatments past 51y. Not too long for me until that milestone is passed and the more cautious neuros will not Rx it. The side effects of dimethyl fumurate - whilst bearable - are v inconvenient. I do not want to sit with clients or colleagues whilst flushing and farting. I want to be able to contribute to the economy and society a little bit more. Having MS in the UK has enabled me to achieve one life goal, and that is to die in debt to the government. This is achieved through the cost of MS care and various surgeries (an active lifestyle in the past!) that have reassembled me. My MS focus now is on getting Ocreluzimab. Forewarned is forearmed.