Reply To: New allergies on Ocrelizumab?

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dominics
1 month ago

@murray – it seems that my allergies are of the boring old seasonal type. My GP has give me me mometasone nasal spray and fexafenadine tables. It has been a brilliant combo.

I had my fourth full infusion about 4 weeks ago. I still had to do 10 vials of blood a fortnight before – they screen me for everything – then a further three vials for the more ordinary bloodwork 2 days before.

They absolutely do not want to give Ocrelizumab if you have any present infection.

There will be a ‘minimum’ set of guidelines for working a patient up to it. I am 51 and this is my fourth DMT over 26y of having Ng MS.

If they were you I’d get my ducks in a row first by looking up and ABN and NICE guidelines. I’d also trawl the Bart’s Blog for Ocrelizumab relted posts.

I made a v. lengthy post on here about 19 months ago regarding the run up and the jabs I was required to take. It was laid out in some detail. Search by my username and look for Nov/Dec 2018 as I started v early Jan 2019.

If I have to have a difficult (or I suspect it may be tricky) chat with the team then I preface it with a detailed email so there is a record and then my favourite phrases are: please can you help me understand why you have chosen to OR not to do…XXX, Please would you explain the medical reasons that underpin n these choices, I have a dreadful memory so please can you record my question(s) and your replies in the notes (that last one alone makes them sit up and take notice that you are not a fool to be bluffed away) etc. All delivered with a sweet smile.

Also, take someone with you to take notes.

Bear in mind: advice changes, science moves on and what may have been done to me is now deemed over-cautious and unnecessary.

Nonetheless, you want to get this studff recorded and explained properly. Either why something is suggested or chinned-off

The majority of docs are good and no one wants to cause harm. However, the quality of approach to the interaction varies widely.

Presently my strong relationship is with my nurse. My current neuro is a real hand-wringer and far above engaging with patients unless it is an annual clinic visit (I think we are grubby and boring to him) but I get what I need via the nurse.

Good luck.