Hi newly diagnosed and new on here.
Relapsing MS and start ocrevus in a few weeks…
Just wondering if anyone has any tips or advice around things that have helped them before, during and after?
I was thinking about drinks, foods, vitamins, those types of things, for example one person told me drinking a can of coke during the infusion helped with a headache
Just anything that has helped you if you don’t mind sharing?
side note I am scared and nervous x
Hey Beccie,
Had a few Ocrevus treatments now and since you are in the chair for upto 8 hours best thing I can suggest is bring along something to do. Snacks always a good idea something you can snack on without moving the arm you are having the infusion in since it can get a little angry when you do XD. Also try not to drink too much.
100% on not drinking too much it’s not a big deal dragging the drip to the bathroom but it can go off thinking there’s a blockage. If on the way there kinda funny bleeping away the whole time.
Even funnier if someone in the one next you is too.
Really there’s nothing to worry about it’s actually pretty chilled out. Depending on where you might not get mobile/WiFi so maybe preload stuff if possible.
You can sleep but you’ll be getting your blood pressure and temperature taken pretty regular.
I take books and a rubix cube but hardly ever touch them always just end up speaking to people. Was actually the first time spoke to anyone about it really (since lockdown etc).
I’d think you’ll get free coffee/tea/water/biscuits and a sandwich but not sure if that’s the same everywhere.
You might be knackered after it more actually following days (few days off work is adviced I try to push though but end up KOed). Also I’ve never chosen to drive after I think some do but at the end of the day to me any risk is too much it’s a fair cocktail you get. Premeds are likely to be strong antihistamine, steroid and paracetamol (so maybe leave off that morning even if you’re used to taking the max for pain etc )
As always I’m no doctor your MS nurse is the one to speak to but think it’ll be similar to that (did my last one last week).
For me, one of the hardest aspects of the infusion was the number of times I needed to go for a wee! My bladder is dodgy and I get extreme urgency anyway, but the combination of the introduction of a fair amount of fluid into my body, in combination with the pre-meds which have a muscle-relaxing effect, meant I was back-&-forth to the loo throughout my infusion. In fact, for my second one, I asked to be in a side room which had an ensuite, to reduce the time/ distance to get there.