@DominicS 

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DominicS

Making yourself Oc ready w PPMS

I imagine that similar caution will be exercised when giving Ocrelizumab to PPMS patients. I also reckon there will be a bit of a rush on. I take Ocrevus presently so will share some of the pre-infusion rigmarole I have had to go through so you can try and make your way through the system as easily as possible. The NHS is wonderful but also totally crap when different parts need to work together. Hospital pharmacy, MS Team, your GP. They get there but unless you help them along they are so very slow. Ocrelizumab is an immunosuppressant (makes you more vulnerable to infection) so a lot of the prep is around ensuring you are in as good a shape (healthwise, not pushups type thing) when you take it. I am prescribed it in Oxford, a large teaching hospital with an entire dedicated neurology research arm of the University. ON, CIS teams are also closely linked with the MS teams and the research (trial( people sit in the same office space as the NHS teams so they share a lot. I guess this is why I have been subject to all manner of things that some aren't. 1 - I have had 14 bloodtests before starting (not all separate but 14 different analyses) from at least 6 vials. 2 - I had a chest x-ray. Looking at my lungs I guess as I used to get lung infections when I cycled hard. no one knows why. 3- a 12 lead ECG. ordered by the neuro but no one seems to know why. It is seeing if I had a dodgy ticker I suppose. *4* - most importantly. I have had 4 separate vaccinations. Alll jabs done at GP surgery. I know mine, they know I have MS, so rung up and just explained this was what the hospital wanted and it was no prob. They just booked me in to see the Practice Nurse. No letters required. a - Pneumococcus. The pharmacy neuro specialist pushed for me to get a 23 valent (the nasties it covers - 23) by MSD without understanding that it was of a very temperamental supply in the UK. The GP didn't have it and it was out of stock. I argued that this was silly and we settled on the more common lower valency vaccine called Prevenar 13. Pfizer make Prevenar13 - https://www.medicines.org.uk/emc/product/453/smpc GSK make Synflorix - https://www.medicines.org.uk/emc/product/463/smpc MSD make Pneumovax II - https://www.medicines.org.uk/emc/product/1061/smpc A typical case of left hand and right hand. Pharmacy didn't check with immunology. Muggins here rang up the wholesalers to understand. b - One of the usual Meningococcal jabs - the GP has them in stock or gets them next day. c+d - the other day I was asked to go and have two further Meningitis jabs. The first one is called MenACWY and the second is MenB (usually for babies so again I had to explain to the practice nurse that I wasn't nuts, the team at the hospital requested it). Apparently, these came about because the team that treats and researches Optic Neuritis uses rituximab which is closely related to ocrelizumab and they have had issues with a few of their patients. My main message is that if you sit back and leave all this in the lap of the gods the wheels of administration can turn excruciatingly slowly for you. You can speed them up significantly by getting in front of things, especially with the GP Surgery administered jabs. Best of luck.
@Stumbler

@dominics , thanks for sharing the benefits of your wisdom, endeavours and experience. I'm sure it will benefit those who have got up this morning with renewed hope. 😉

@DominicS

Expectation management.