Having Tocilizumab infusions and now having migraines. - NRAS

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Having Tocilizumab infusions and now having migraines.

Hils profile image
Hils
7 Replies

Hi all, enjoying the sunshine I hope. I've had five Tocilizumab infusions now and after the last one, two weeks ago I had a debilitating migraine that laid me low for six days. The migraine itself lasted three days and my blood pressure was very high. I'm just recovering from yet another migraine and wondering if anyone else gets these bad heads? My next infusion is just over a week away and although I can't say it's the toc that's causing the migraines I am suspicious. Does anyone else experience migraine and how do you cope? Best wishes, Hilary

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Hils
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7 Replies
allanah profile image
allanah

I would tell the rheumy nurses before the next infusion and let them and your GP see the bp results xxx

Crazyjo profile image
Crazyjo

I am about to have my 5 th tocilizumab on weds, not as of yet had migraine but do get a lot of headaches

Hils profile image
Hils

Thanks for your comments, I'm thinking I will have a chat with my GP and the rhuemy nurse before I go for the infusion. Fingers crossed no more headaches.

Ee70s profile image
Ee70s

Hello Hils,ive been having Toc for 17months now,ive always been fine but on my last one i also had a very very bad head the day after which lasted for 2days Mmmmm,im thinking that sometimes the Toc could be made by different companys just like tablets.Last hope our next ones are better?You do have your bloods tested inbettween?Take care.

Hils profile image
Hils in reply toEe70s

Yes my bloods have been quite good for a couple of months, so it's having the desired effect. My consultant wants me to take paracetamol during the day of my infusion but if a migraine comes paracetamol doesn't go anywhere near it. Not thought about different manufacturers tho, interesting. Cheers and good luck, H

alibromo profile image
alibromo

Hi hils i have been on it for nearly 2 years now. The only advice i can give you is to drink plenty water the day before & during your treatment i find this helps me. Hope everything goes ok for you next time Alison xx

Hils profile image
Hils

Thanks Alison I will certainly try taking more water. Fingers x'd for Monday !

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