headaches and remicade

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coprhead
Regular Member


Date Joined Feb 2009
Total Posts : 42
   Posted 10/4/2009 8:54 PM (GMT -6)   
hi all i have been on remicade for 12 treatments and developed very nasty headaches went to doc on friday and the doc is changing me to humira has anyone been through this and do the headaches ever stop i have had a constant headache for 17 days the pain meds help but do not get rid of the headaches
Jody
Age 34-Male-South Carolina
Diagnosed 02/08 Severe pancolitis
Colazal Predinsone Entocort Lialda-No Help
Mesalamine-Little help
Remicade-third infussion-still no change


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 845
   Posted 10/5/2009 12:11 PM (GMT -6)   
We are in the same boat. Ongoing headaches, no known cause. Having a brain mri today to rule out the nasty stuff. Blood work normal, eye doc says normal.How did your doc decide it was the Remi? I am not willing to go right to the very last med we can take(Humira) without being very sure it is caused by the Remi. Once you stop, you can't go back. What things did your doc check before that decision? Don't know what do to here either.... please keep me posted.
Daughter, 16 diagnosed 1-08 w/ UC .
Previous drug sampling: Asacol, Cortifoam enemas, Rowasa,Prevacid, Flagyl, Prednisone- 50 mg to 0, 4 major flares '08-09.Hospital 4 x.
Trying probiotics, Niferex, fish oil, Magnesium, Acupuncture.
Remicade 10mg per kilo@ 8wks, since 10-08. Still on 6mp and Colazal W/ Remi. Remission. 4-09....


coprhead
Regular Member


Date Joined Feb 2009
Total Posts : 42
   Posted 10/5/2009 6:46 PM (GMT -6)   
i was getting a headache every treatment most of the time the headache would go away by the next day but the last treatment the headache started and has not went away it has been 17 days now and still have a really nasty headache that causes upset belly and dizzyiness sometimes the pain meds (tramidol and hydrocodine) help but never gets rid of the headache doc said i should have better luck/sucess with humira
Jody
Age 34-Male-South Carolina
Diagnosed 02/08 Severe pancolitis
Colazal Predinsone Entocort Lialda-No Help
Mesalamine-Little help
Remicade-third infussion-still no change


coprhead
Regular Member


Date Joined Feb 2009
Total Posts : 42
   Posted 10/6/2009 5:27 PM (GMT -6)   
hi katmom
                 was wondering how the mri went the doc called today and wants me to have a mri set up but i think i will wait a while and see how things go looking forward to seeing if insurance will cover humira
Jody
Age 34-Male-South Carolina
Diagnosed 02/08 Severe pancolitis
Colazal Predinsone Entocort Lialda-No Help
Mesalamine-Little help
Remicade-third infussion-still no change


V. Susie
New Member


Date Joined Sep 2008
Total Posts : 11
   Posted 10/6/2009 9:24 PM (GMT -6)   
Two infusions ago after they doubled his Remicade dose, my son started getting bad, bad headaches that would wake him up at night off and on for two weeks -about 2 to 3 weeks after his infusion. Tylanol didn't touch the pain. The headaches started again 2 weeks after his last  Remicade infusion.  He started taking 3.5 Benedryl at bedtime and that seems to be really helping. (He weighs 150 lbs.) .  He hasn't had a headache since he started the benedryl.  Our doctor said some people have reactions to the remicade 2 to 3 weeks after infusion and they usually treat it with steroids and benadryl a few days before infusion and for few weeks after.  For my son, it seems that just benadryl is working for him.  I don't know if that would help anyone else.  I might add that my son had bloodwork today to check for Remicade antibodies.  No results yet. 

Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 845
   Posted 10/7/2009 7:45 PM (GMT -6)   
Thanks for the info. The MRi came back negative for big scary stuff today. Now, have to get to the bottom of the headache's causes. May try the Benedryl, can't hurt. Next infusion is Friday, and we are lowering her dose.. Pain is a dull throbbing behind the eyes.. Seems to be livable this week, but not gone. Doc thinks it could be anything. Maybe an EMT to ensure no sinus stuff, and mess around with her dosing of Colazal., going back on the real stuff(doc didn't think the generic would make a difference, but you never know).
Thanks for the good advise
Daughter, 16 diagnosed 1-08 w/ UC .
Previous drug sampling: Asacol, Cortifoam enemas, Rowasa,Prevacid, Flagyl, Prednisone- 50 mg to 0, 4 major flares '08-09.Hospital 4 x.
Trying probiotics, Niferex, fish oil, Magnesium, Acupuncture.
Remicade 10mg per kilo@ 8wks, since 10-08. Still on 6mp and Colazal W/ Remi. Remission. 4-09....

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