Last reply 3 months ago
Yet more pre-ocrelizumab jabs

Getting ready for round 2 of my Ocrelizumab (Ocrevus) in June. Chatting to my MS Nurse today and he told me that after the MS Team, the neuro-pharmacy bod and the infectious diseases crew met – those meetings must be a bundle of laughs – that it has been decided that I and presumably the other recipients in Oxford need a further two immunisations.

these are Men B and MenACWY. Both versions on the meningococcus vaccine. The B is usually given to newborns in two doses 4 weeks apart. I had to call the practice nurse and explain that I hadn’t lost my mind or misheard something and I did want the jab for babies.

The MenACWY is quite common and is often given to new Uni students as they are all living in close quarters sharing god knows what germs with one another.

So off I toddle on Friday for both and then the follow-up MenB a month later.

To date then:

14 different blood tests (some combined but at least 6 vials of blood)
a chest x-ray
an ecg
a Pneumococcal jab
a combined jab for two other nasties – it’s late, can’t recall the name
Men B
Men ACWY

Not at all cautious are they 🙂 Still, better safe than sorry.

I am a walking pincushion.

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mlgilber1
3 months ago

All they have me do are some blood tests. Very different in the US.


dominics
3 months ago

I think that since it has been used for 13 mo longer they are more comfortable. They are cautious and they are also experts, having been part of the main trials.

The work underpinning this piece causes a great deal of caution. I am certainly more sensitised to the potential severity of any lurgy I get.

https://multiple-sclerosis-research.org/2019/04/ocrelizumabs-known-unknowns/

Prob worth popping it in front of your neuro and asking them their view on the research.


dominics
3 months ago

To be clear: I am not pausing nor worrying.

The drug(s) are pretty serious, but then so is untreated MS. I am a strong advocate of following the research and not my gut feeling.

It is well accepted now that MS isn’t an on and off sort of thing with no damage happening during the ‘off’ period.

If you have it, treat it. Treat it hard. I’d be on stem cells tomorrow if I had a spare £80k sloshing around.

Rant over 🙂 I’ll get off my soapbox.


gemski1
3 months ago

@dominics

I’m in the UK and will receive my first full dose on 20th May. I’ve only been asked to do ‘normal’ blood tests plus one for HepB.

Thanks for posting this, will mention to my MS Nurse and more importantly be more vigilant about the severity of any infections.


rea
3 months ago

Food for thought @dominics.
Just a raft of blood tests for me and an MS nurse who really played down the infection risk. After my first half dose today with no reactions whatsoever I was feeling a bit blasé about the whole thing. Maybe I should pay a bit more attention to potential infection risks🤔


daveo
3 months ago

Thanks for posting the update @dominics. It must be reasurring that your Ms team are taking the right precautions – sounds like you have a good bunch. I was steered towards cladribine after failing on dmf which I’m grateful for as I’m encouraged by what I’ve read so far. But I’m thinking ocrevus if things don’t work out.

Thanks for the work with the railcard too. It’ll save me a small fortune on my commute to work.

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