Allergic reaction to Remicade and more

I am sorry that you are struggling. I had to stop Remicade due to similar reasons which is why I opted for the pouch. At this point I don't have many if any medication to try if antibiotics and probiotics fail to keep pouchitis away, I have either reacted badly or got no effect from the meds.

Just try to stay positive and hopefully the next infusion will go better. Good luck!

I don’t understand why they aren’t stopping the Remicade and trying another biological like Entyvio? Normally from what I have seen if there is any kind of allergic reaction it’s stopped immediately. I have personally witnessed another person have a milder reaction and they stopped Remicade on her and told her she would be tried on Entyvio instead.

I agree with CT.  When I had a reaction to Remicade, my GI said that even if it was working I didn't need to feel that bad.  I'd ask for another biologic to try rather than continue the misery.  (Your situation sounded so much like mine with Remicade. I'm now on Entyvio.)

Thinking of you!

Right from the start I was allergic to mesalamine. Had to have a picc line inserted for direct steroids. When that wasn’t enough, I started Rremicade. I had another reaction to Remicade and couldn’t try another immunosuppressant drug (like Humira) because I was underage. Since it was my last option before surgery, my doctor started to give me a large dose of steroids before my infusion therapy to combat any reaction. That worked for me for a couple of years and I definitely would recommend trying this before resorting to surgery.

I highly recommend trying Entyvio. I had a really bad allergic reaction to Remicade and was switched to Humira. After the 2 doses I started having a allergic reaction to Humira as well. Both reaction caused hives everywhere on my body and my skin would peel off easily. I'm 20 years old and I was fed up with it. Told my doctor that I wanted to try a new style of biologic and he suggested Entyvio. He said that Entyvio has been their "best results" medication. I started Entyvio in June of 2019, haven't had a flair up in half a year ( got them every two weeks on Remicade). Ask your doctor about Entyvio or another type of biologic. Hope you find a medication that works for you.

So sorry to hear what you are going thru so many of us know it. I will just share my experience with drugs you are noting for another perspective.

I was put on remicade prior to colon/pouch surgeries and I got horrible hives/breakouts during infusion. I'd eat benadryl like candy during them. Turns out it never worked for me anyway so we stopped after a few infusion tries.

fast forward 15 years later when I needed biologic after having pouch for 10+ years they put me on Humira instead of remicaid as I had advised about my allergic reaction a decade earlier.  Humira has helped me for a couple years...unfortunately getting antibodies now but still on it. But definitely helped.

as for Mesalamine, I have done GREAT with canasa suppositories (I'm fairly sure canasa are mesalamine?). They were the only mesalamine product that worked for me and they have been my best friend for 10 years.