Remicade?

[Liza123]

Hi Everyone!
I have Crohn's and have been on Remicade a year. I have been having a strange reaction that I wanted to see if anyone else has dealt with.
Periodically I will be extremely sick for one day as if I have the flu...
high fever, rapid heart rate, high blood pressure (mine is usually very low), chills, muscle aches, and I'm in bed. Then it's gone.
Does anyone else experience this? Is it worth talking to an IBD specialist?
Thanks in advance!!!

 

[ronroush7]

Welcome, Liza. I would talk to an IBD specialist. I don't know but he might need to switch medicines on you. We would be interested in knowing what happens.

 

[Liza123]

Thank you! I'm so glad this forum exists I have read posts for a few years but finally decided to join. I have had CD for 11 years.

Ugh I hope not a med change the Remicade has been AMAZING otherwise my CD symptoms are pretty much gone. I failed imuran and entyivo already

 

[ronroush7]

Hoping for the best.

 

[lgpcarter]

Can you detect any pattern on when these "attacks" occur? Is it close to the infusion?

I was on Remicade for 10+ years and never experienced this. Are you on any other meds with the Remicade and are they pre-medicating you with the infusions (steroids, benadryl, Tylenol)?

I would definitely mention it to your GI.

 

[Liza123]

Yes they are typically a week or two weeks before an infusion and during times of high stress. I didn't know if it's just how I am fighting off things with my immune system now or some strange reaction.
I'm on no other meds but I get anti nausea with my infusion

 

[SpaceCat]

Hello! i'm new here! I started my Remicade treatment earlier this year, i'm currently 19 years old, my Crohn's disease started to show shortly before i turned 18, then i finally decided to go to the doctor with it, the whole time i was on prednisone and later when that didn't work they switched me to imuran, during that time i have lost alot of weight, the only thing that put me back up on my feet were corticosteroids. Now that i have started taking Remicade i am feeling finally alright, but only recently i have read up on the increased risk of cancer in patients being treated with Remicade, and i would like to know how are the odds looking for me if i was taking Imuran definitely over six months before i had my first Remicade infusion.

 

[ronroush7]

Hello! i'm new here! I started my Remicade treatment earlier this year, i'm currently 19 years old, my Crohn's disease started to show shortly before i turned 18, then i finally decided to go to the doctor with it, the whole time i was on prednisone and later when that didn't work they switched me to imuran, during that time i have lost alot of weight, the only thing that put me back up on my feet were corticosteroids. Now that i have started taking Remicade i am feeling finally alright, but only recently i have read up on the increased risk of cancer in patients being treated with Remicade, and i would like to know how are the odds looking for me if i was taking Imuran definitely over six months before i had my first Remicade infusion.

I would say tell the doctor about your concerns and have him do blood work every so often.