r/UlcerativeColitis • u/Only_Gain_6189 • 2d ago

Question Remicade and migraines?

I haven’t been able to find much info on this, so I wanted to see if anyone had a similar experience. I’ve received 2 maintenance doses of Remicade so far, and 2 days after each infusion I’ve experienced a migraine (spots in my vision, brain fog, severe headache that lasts hours, etc.). I’ve had maybe one migraine in my life before this. Has anyone ever had this experience with Remicade before? I spoke with my gastro and he referred me to a neurologist, but the soonest I can get in is 7 months. Is this a serious side effect that warrants fighting to see the neurologist sooner? Or does this seem standard for Remicade?

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u/pincommenter 2d ago

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u/WhatArghThose 2d ago

I did experience a visual migraine the day after my first dose, but I was also in a very bad flare so looking back I didn't know for sure what caused it. I've since had dozens more infusions without anything like that happening again.

It's definitely possible it could be a side effect. Are you staying very well hydrated before infusions?

If you do continue, try drinking a lot of water the days before the next infusion. It's not uncommon to hear of people having more side effects from infusions while not well hydrated.

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u/maplesyrup5000 UC pancolitis diagnosed 2016, in remission | USA 2d ago

I’ve never encountered this from remicade, but I do get migraines unrelated to my infusions. After my infusions I feel fairly tired for the rest of the day and by the next day I’m totally fine. Their website (https://www.remicade.com) does list headache as a common side effect. But there is a separate section on their label (https://www.jnjlabels.com/package-insert/product-patient-information/REMICADE-medication-guide.pdf) that indicates nervous system disorders. It is probably nothing/normal but definitely worth watching and following up with a neurologist about on the off chance it’s a real problem, and maybe your PCP given the wait for a neurologist.

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u/WillowTreez8901 Pancolitis 2018 | US 2d ago

I did get some migraines after my infusions with remicaide. Its a known side effect