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Headaches from Remicade?

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Ulcerative Colitis
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Posted 4/16/2013 2:33 PM (GMT 0)
I've been getting these horrible headaches that last 1-2 days every week or so. My mom asked me yesterday if she thought it might be the Remicade since I just had my infusion last wed and had the worst one yet on sat. I mean, these things are borderline migraines. Or maybe mild migraines. I don't know. I have minimal experience with migraines. I do have sensitivity to light and often feel nauseated during them. I can't take Advil of course. Tylenol does nothing. I was popping pills like crazy on saturday (flexeril, tramadol, tylenol, xanax...I was desperate) and it just had to go away on it's own. I was in and out of sleep ALL day.

This is not normal for me. I get headaches, but usually I can ignore them or 2 tylenol will do it. I certainly don't stay in bed all day because I'm in so much pain!

So is it maybe the Remicade? I'm hoping not because I'm FINALLY in remission. I'm eating normally again (well, I still eat a lot of baby food so I don't overdo it and screw up my colon again, but mostly eat normal food). I'm not having ANY symptoms anymore. If I have to give up the Remicade, then what do I do?
Posted 4/16/2013 2:44 PM (GMT 0)
I seem to have been the exception but also got HORRIBLE headaches with Remicade. I to would never get headaches prior to being on Remicade. I saw a neurologist to make certain nothing was happening in the brain and luckily nothing was there (pun intended).

I switched to Humira and still getting the headaches. I too am not sure where to go from here because I am taking strong stuff to try and keep me functional when they come on.
Posted 4/16/2013 3:06 PM (GMT 0)
I also had bad headaches on Remicade, but only the day or two after the infusion. I also found no medication touched it and I had to just wait it out.

Are you having the headaches on and off all the time or just immediately after an infusion? If you're having light sensitivity and nausea it probably is a true migraine -- there are lots of migraine meds that aren't NSAIDs, perhaps you could try a real migraine med with the help of your GP? I'm sure it is really frustrating but I would be really hesitant to give up on Remicade if it's actually gotten you into remission, that is a precious thing.

If the headaches are just around the time of infusion, you could try stretching out the length of time you wait between infusions and see how you do, to at least reduce the number of headaches/year... I have a friend with AS who uses Enbrel (another biologic) and she's been able to stretch out the wait between shots from one week to 12 (!).
Posted 4/16/2013 3:31 PM (GMT 0)
I had very brutal headaches every now and then when on Remicade as well. I stuck with it though as the benefits from Remicade far outweighed the down side of the headaches. Although when having them it was really tough to get through.

I wish I has some advice for how to deal with them, but I don't. I'd say call in and talk to your GI about it and find out what "strong" headache medication you can take while on Remmy.

Also I found hydration played a role - So i drank a lot a water and ate properly.. it helped.
Posted 4/16/2013 3:48 PM (GMT 0)
Will my GI doctor prescribe something? I remember my ex husband had success with topamax for his frequent migraines. But I think it's primarily used as an anti-seizure med isn't it? Not sure if I want to go through the wait process of getting in to see a neuro. It would likely be months before I'd get in.
Posted 4/16/2013 3:50 PM (GMT 0)
Your GI should... or at least have some knowledge of what you can and cannot take while on Remicade. Same with the Pharmacist - actually I find they know better.
Posted 4/16/2013 3:55 PM (GMT 0)
Ok, just waiting for a call back. I'm not opposed to medicating to control side effects. I was a hot mess with that flare and I thought it would NEVER get under control. I would hate to give up the one med I feel is working.
Posted 4/16/2013 5:10 PM (GMT 0)
After about 6 months on Remicade I started to have headaches for about 4 days after the infusion and more frequent headaches on a regular basis. Going the ask the Dr. about it at my next appointment.
In the meantime I've found Excedrin Extra Strength or Excedrin Migraine has worked well in getting the headaches under control. I know they contain NSAIDs, but for some reason my digestive track doesn't seem to mind.
Posted 4/16/2013 7:30 PM (GMT 0)
So I guess they want to see me in the office tomorrow. We'll see...
Posted 4/17/2013 6:56 PM (GMT 0)
Ok he's starting me on topamax. But he said if that doesn't work, we may need to go to a different med and drop the remicade. We did decide to stretch them out to every 6 weeks instead of every 4 week though. So maybe that will help ease off the side effects too.
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