Last reply 1 week ago
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.

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stumbler
1 week ago

@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
1 week ago

Expectation management.


smurf69
1 week ago

I too am on Ocrevus but only started last Monday (due 2nd half next Monday). I didn’t have anywhere nearly as thorough a prep as @dominics. I just had blood tests, urine test 2 weeks prior plus tested on the day. No chest x Ray, ecg or vaccinations.

One thing I’ve discovered about vaccinations though is the timing of the flu jab. I know it’s a way off but I needed to consider it as my first full dose is due at the end of October. I’ve found out that vaccinations are best completed 6 weeks prior to Ocrevus infusion. This is because if it’s given at another time you might not have enough B cells to mount the correct response to the flu vaccine. My plan is flu jab as soon as I can later in the year and then Ocrevus 6 weeks later which may mean later than end of October.


dominics
1 week ago

@smurf69 – I queried all the extra attention I was getting regarding jabs etc. My MS Nurse said that there was a minimum protocol for use in the UK but that as they were involved with so many trials and research (the neuroPharmacist who inputs is someone big in their field apparently) that they make additional requirements up.

Oxford was involved in the Ocrelizumab trials for several years and also has a great deal of experience with Rituximab. Who am I to question all these big brains. I take everything they do as being guided by a desire to reduce the chance of harm occurring to me. I’m down with that!


smurf69
1 week ago

@dominics, wasn’t querying your prep for Ocrevus but just wanted to clarify that it may not be standard everywhere. Wish it was though as I prefer it to be thorough if I’m honest.
I’m still feeling rough from 1st half and gotta do it all again on Monday ☹️
Hoping short term pain for long term gain though ☺️


dominics
1 week ago

I didn’t think you were! I am just an order-taker in the process.

I think you have just the right attitude. Feel a bit crap? Sure, to be expected. The benefits are decent.

Best.


smurf69
1 week ago

Thanks @dominics. Hope you’re doing ok on O too 👍

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