Remicade and headache/back pain

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Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/7/2009 12:51 PM (GMT -6)   
Had my 2nd Remicade treatment yesterday and have had a headache and back pain since last night. Alieve and tylenol doing nothing.
Is this normal?
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle

Had FIRST Remicade transfusion in the hospital 4/22/09


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 5/7/2009 9:18 PM (GMT -6)   
I've noticed headaches, but tylenol kicks it out.
You need to relax, darlin', you are over-analyzing every little thing! Try to focus on something else.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; used prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ 


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 5/7/2009 9:28 PM (GMT -6)   
If it persists or worsens notify your doc.
Proctitis DX 1999, Pancolitis DX 2008
Immuran
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3+Ca/1000mg DHA


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 5/8/2009 7:31 AM (GMT -6)   
Is it like your back is spasaming?
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/8/2009 7:35 AM (GMT -6)   
Everything is better this morning. It was just dull achy pain. I told the doctor about the headache and he said it wasn't a normal side effect so maybe it won't happen next time. It was a pretty bad headache though!
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle

Had FIRST Remicade transfusion in the hospital 4/22/09


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 5/8/2009 8:23 AM (GMT -6)   
I had side effects like that and the third one didn't work for me. Hopefully you will be able to manage the third one. I will be praying that the side effects disappear.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


mamaluke
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 5/8/2009 1:18 PM (GMT -6)   
my son was on REmicade for about three or 4 months until it stopped working but the whole time, he had terrible headaches and constant back pain. even though the symptoms of the UC subsided for a while, the side effects made him feel pretty lousy all the time. Right now I am at Mt Sinai Hospital and he is undergoing surgery to remove this awful disease from his body. We've exhausted all other options and I'm hoping that tomorrow will begin a new life for him, His quality of life with UC combined with all the toxic meds made the final decision pretty easy for him.

better check with your doc if Aleve is ok for UC patients - we were told to stay far away from it because it can cause bleeding. I might be wrong, but best to be sure. Good luck

Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/8/2009 1:39 PM (GMT -6)   
I'm not over analyzing, I was just suffering from a terrible headache and back pain which ruined my whole day! I want to know if that's what I can expect or is typical after every infusion that's all! Tylenol and ibuprofen did not help at all! The headache subsided last night but was a pronounced sinus headache with a fever this morning. Considering I have been feeling GREAT for the last two weeks after being sick as heck for 3 months with my colitis I'm not too happy to be feeling sick again just when I was getting back "in the swing of things".
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, Prednisone 20mg per day, Rowasa Enemas 2/day, Culturelle

Had FIRST Remicade infusion in the hospital 4/22/09, 2nd infusion 5/7/09 (I think the first infusion put me in remission!)


fargman
Regular Member


Date Joined Dec 2008
Total Posts : 74
   Posted 5/8/2009 1:56 PM (GMT -6)   
I have never suffered any of your symptoms. In fact, after my infusions I feel perfectly normal. I go in the early mornings before work and it doesn't affect me at all.

I wish you the best with your future infusions and hope the side effects were a one-time thing!
Diagnosed '93. 
 
Asacol, Prednisone, Remicade, Imuran
 


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/8/2009 2:04 PM (GMT -6)   
mamaluke said...
my son was on REmicade for about three or 4 months until it stopped working but the whole time, he had terrible headaches and constant back pain. even though the symptoms of the UC subsided for a while, the side effects made him feel pretty lousy all the time. Right now I am at Mt Sinai Hospital and he is undergoing surgery to remove this awful disease from his body. We've exhausted all other options and I'm hoping that tomorrow will begin a new life for him, His quality of life with UC combined with all the toxic meds made the final decision pretty easy for him.

better check with your doc if Aleve is ok for UC patients - we were told to stay far away from it because it can cause bleeding. I might be wrong, but best to be sure. Good luck



I wish your son the best of luck! UC patients are always dreading the thought that surgery might be necessary, but at least it IS a cure! I wish your son a fast recovery and a successful surgery.
Thanks for the tip on Alieve, I did not know about it poss. causing bleeding!

Although I'm not happy to hear Remicade did not work for him or that he suffered these side effects, at least I know I'm not the only one! At least I have another month until I need another infusion so hopefully I will be feeling well the rest of the month!
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, Prednisone 20mg per day, Rowasa Enemas 2/day, Culturelle

Had FIRST Remicade infusion in the hospital 4/22/09, 2nd infusion 5/7/09 (I think the first infusion put me in remission!)

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