Migrains/headaches, fatigue, hair loss during remission

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Veteran Member

Date Joined Mar 2008
Total Posts : 1766
   Posted 6/7/2010 3:03 AM (GMT -7)   
I have UC, but I didn't get much of a response on the UC forum when I posted something similar before...has anyone noticed that they get more headaches and migraines after getting IBD or taking Remicade? During the past few months, I'm getting headaches or migraines almost every week (which is a lot for me). I've been on Remicade for two years, but after the last two infusions, I got migraines afterwards. I'm so sick of this!

Also, do people have unbearable fatigue and hair loss even during remission? Could it be Remicade, or just that my body hates me?

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 6/7/2010 6:15 AM (GMT -7)   
I don't have any answers on the Remicade and headaches, as I haven't been on Remicade. But....I am currently in remission, but I still have alot of fatigue. In fact, my husband always teases me because of my "nap before bed" I always take:) Also, I am on Asacol too and it does cause some hair shedding, not alot, but I still see it. Folic Acid and/or Biotin are supposed to help with that. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Regular Member

Date Joined Jan 2010
Total Posts : 430
   Posted 6/7/2010 7:45 AM (GMT -7)   
After my first two infusions of remicade, the only thing different that I've noticed are headaches. I felt like I had a head cold and was generally groggy. No hair loss yet, but I did have it from asacol/stress of Crohns as a kid. I'm not worried about it.
Diagnosed with typical Crohn's at 16.
Got lucky with Asacol for a year, then even luckier with ten years of relative remission.
Now abscesses and fistulas are having an "atypical" Crohn's party around my junk.
The surgeon said it is inoperable and so I start Remicade on May 7th.

Julia Hill
Veteran Member

Date Joined Mar 2008
Total Posts : 560
   Posted 6/7/2010 4:50 PM (GMT -7)   
I am on Humira and I have headaches now also. Definately a side effect of the Humira. I can't remember if I got them when I was on Remicade.


Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 6/7/2010 8:34 PM (GMT -7)   
those could be alot of different things, everything from a serum reaction, some malnutrition issues, to just plain old dehydration.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

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Veteran Member

Date Joined Mar 2008
Total Posts : 1766
   Posted 6/8/2010 6:09 PM (GMT -7)   
All of my blood levels are normal and I'm otherwise "healthy."

I had hair loss even before I switched back to Asacol, so I don't think it's the culprit. And I've been in remission since Jan. 09, so it can't be b/c of active disease. I'm so confused.
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