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10 months ago

@dominics , NICE issued its Ocrevus guidance on 25th July, giving the NHS 3 months to implement these recommendations.

Given this timeline, the number of UK MSers receiving this treatment will probably be as rare as rockinghorse shit……..

10 months ago

I was offered it or tecfidera in may went with the tablets as Ocrelizmab gave a high risk of Breast cancer and I’m already under that clinic! A friend I met in the recently diagnosed day with our local health board is starting on it this week.

10 months ago

@stumbler – well aware of that. Additionally, the Neuro dept needs to get a Blueteq request in (the high cost drug system). Many haven’t done this for MS yet as it was spawned from the high cost cancer drugs.

It is yet more bloody bureaucracy for CCG’s etc to ensure that a ‘different’ fund covers the care costs rather than the CCG doing it. Same money supply, different pots.

I have been on dimethyl fumarate for 5y now and though tolerable it is a complete pain to manage along with Vit D, Duloxetine and Modafinil. I see a different neuro in London from time to time and he suggested that Alemtuzumab carried too high a risk for me but I was to wait for Ocreluzimab (a convo 12 mo ago).

My main aim is to meet the Rx criteria for it as it is indicated if alemtuzumab isn’t suitable (tick!) and there is the usual evidence of activity. So, I had an MRI yesterday and now I need to formulate a cogent argument for being Rx it. If my local neuro won’t do it I am going to have to screw my eyes up, dig deep in my pocket, and see the other one privately and hope he will follow-though on his previous position and Rx it for me.

If that happens it is a fag as I’ll have to traipse to London to get it. It is likely, though by no means certain, that it will improve fatigue and neuropathic pain, so I can potentially reduce or eliminate some of the other meds. Plus, it is an infusion every 6 months instead of daily pill gobbling.

@dixce – really interesting, thank you. Please can you share some more info about location and hospital (poss even the neuro’s name) with me. Please PM if it is not a forum topic as I want to respect your privacy. Knowing which hospital and CCG is crucial info as it means they can be used to show others that they are lagging, it is possible etc etc

Thank you.

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