hi - this is all a bit new to me - sharing things with strangers but here goes... i have Crohns disease - 23 years now - and have been on several medications pentasa, prednisilone, azathioprine, methotrxate and various others lucklity no surgery as yet. But after having yet another relapse while on methorexate my consultant recomended i start the infusion so i had my first one on 6th February and have 3 others since. my last infusion was on 20th march and 2 weeks after i developed tonsilitus and a severe red itchy rash - which was put down to a virus caused by my throat infection and the anti-biotics i was taking for it - i have since releised it is a rejection of the infliximab !! i have been trying trying to speak to my consultant as i am due another one on 16th may - i am unsure as to what to do and he doesnt seem to appreciate the urgency of this situ. I am now after having rash for 5 weeks developing joint pain in my neck, shoulder, wrists and knees but as yet no other signs of flare up YET !!- is this related to whats happened recently !!!! thanks for any advice and i am waiting eventually to hear from my consultant - shall keep you posted on his response if any !!! i am feeling atm that my local doctors and my consultant dont give too hoots - advice please !!!
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Reaction to infliximab
- Thread starter dianeelizabeth
- Start date
theOcean
Moderator
- Location
- Toronto, ON, Canada
Joint pain sounds more like it's from flare, but the rash definitely sounds like it's from Remicade. You could ask to get steroids and Benadryl before your next infusion before totally ruling it out.
I agree with theocean, joint pain can be a precursor to a flare for many people here, or it can happen without an intestinal flare. It's not necessarily a flare or the infliximab.
Having a reaction like a rash doesn't mean you definitely have to come off the infliximab, it may be a case of asking for an anti-histamine before the infusion or possibly a small dose of steroids.
Keep trying with your consultant and try to see if your hospital has an IBD nurse as they are usually easier to pin down and can be very helpful with things like these.
Having a reaction like a rash doesn't mean you definitely have to come off the infliximab, it may be a case of asking for an anti-histamine before the infusion or possibly a small dose of steroids.
Keep trying with your consultant and try to see if your hospital has an IBD nurse as they are usually easier to pin down and can be very helpful with things like these.
thanks Nicola - i have an anti histermine injection before having my infusion anyway but after going to a skin disease clininc they have confirmed it is a rejection of the infliximab even with the bendryl !!! which is disapointing really !! and trying to speak to my consultant has been a nightmare as he alwys seems to be on holiday !! and the ibd nurse tells me to speak to him !! so atm i feel very let down !! thanks for your reply x
- Location
- New York, USA
I had a case of step throat and resulting severe body rash that still hasn't totally cleared up. A reaction to remicade usually happens fairly close to the infusion time, I personally would think long and hard about coming off or if it has been helping you. It is now at least three years since I had that reaction and am still on remicade.
theOcean
Moderator
- Location
- Toronto, ON, Canada
I'm sorry to hear you're allergic to the Remicade! I was too, which is why I'm on Humira now.
also consider the possibility that it could have been the antibiotics.
Many of my symptoms happened after i took antibiotics and it is suspected that antibiotics may be an environmental risk factor for developing crohn's as good bacteria in the intestines can be eliminated by them. here is some info about it.
http://www.npr.org/2014/04/14/302899093/modern-medicine-may-not-be-doing-your-microbiome-any-favors
Many of my symptoms happened after i took antibiotics and it is suspected that antibiotics may be an environmental risk factor for developing crohn's as good bacteria in the intestines can be eliminated by them. here is some info about it.
http://www.npr.org/2014/04/14/302899093/modern-medicine-may-not-be-doing-your-microbiome-any-favors