Remicade and headaches

[Jackie]

Well, just had my second infusion a week and a half ago. The first infusion went fine, but then I ended up in the hospital a few days later (unrelated to Remicade, just bad/ironic timing) because my ileocecal valve finally slammed shut. Had my ileum and part of my colon taken out...not fun, but oh well! Here is my situation. About 5 days ago I started to get really bad headaches. REALLY bad. :ybatty: At first they would go away with Tylenol, but now it doesn't give me any relief at all. I know that one of the side effects of Remicade is headaches, but I guess I thought that if I was going to be bothered with that, then the headaches would have started within a few days. Anyone else have headaches with Remicade and if so, then how long did they trouble you?

My first infusion was back on 9/27. Even though the next one was supposed to be two weeks later, I ended up in the hospital for 3 1/2 weeks - then again a week later for a week with C-Diff and colitis because of all the antibiotics, etc. That is why I am just now getting my second infusion. My third is Dec 11th.

Any insight or help, I would greatly appreciate it! Thanks!

 

[Kev]

Jackie, considering everything that's going on, it may not be the remicade. Have you talked about this with your doctors? I would have ASSUMED that a headache from remicade would have started from the get go. The fact that it didn't would cause me to check for the possible development of antibodies, or other issues. It's possible that its just a late blooming side effect, but that's a really big assumption.

 

[D Bergy]

Remicade has dehydration as a somewhat rare side effect. Since many headaches are a result of dehydration, this may be an area to check out.

Good Luck

Dan Bergman

 

[Kev]

you know, there's supposedly a very simple, effective way to determine if one has become dehydrated. it may be indicative in only extreme cases, but I periodically use it myself, just in case. You simply pinch the skin (not painfully) on the back of your hand, and see how it responds. If it immediately snaps back into place, you're not dehydrated. If it does so slowly, you are. that's strictly anecdotal, but i've seen health care professionals use this technique.

 

[Jackie]

Thanks for your replies! I definitely don't think I am dehydrated. I drink my 8 glasses of water each day usually and try to stay away from soda and really salty foods.

I see my general doc tomorrow as a follow up from my last hospital stay. He will run blood tests, etc. and I will certainly be talking to him about the headaches. Looking into it headaches seem to be pretty common with Remicade BUT it is usually during the infusion or within the next 1-2 days and not a full week later. I was severly anemic last time in the hospital and had two blood transfusions. Again, if there was a problem with the transfusions then I would think that it would have shown up rather quickly. I don't feel particularly tired or I would think that maybe I was iron deficient and that was causing the problems....dont know.

Crohn's can be such a lovely disease, can't it....:ymad: