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Very Scary Reaction to Remicade

I was on Remicade several years ago and it worked great for me, until it stopped. I tried Humira, which didn't work great for me so after about a year and a half break my GI thought we should try Remi again. The first infusion was fine. They pre-medicated me with benadryl and steriods. After a week, I started having really bad joint pains. I didn't think it was the Remi, but rather just a reaction from all the inflamation I have. Second infusion yesterday did not go well. They pre-medicated again, which caused me to fall asleep. The nurse came in to take vitals and when I sat up she asked if I was ok and I shook my head no. I didn't know what was wrong but I knew something wasn't right. She walked out and within 3-5 seconds I couldn't breath, talk, started burning all over, turned bright red and thought I was dying. Luckily there was a guy in the room with me and he started screaming for help. They rushed in, cut off the line, gave my oxygyn, more steroids and benadryl. After I started breathing again, I started vomiting and having severe stomach cramping. This was honestly the scariest experience of my life. I really thought I was dying. I would never want to detere anyone from getting Remi, it worked wonders for me the first time. I did want to share my experience though. I am now onto Methotrexate and Cizma.
 
I'm really sorry that you had go through this experience, but thank you for telling us about it. I think all of us on Remi are aware that there can be serious side effects, but it can be difficult to spot the early signs. Is it the drugs? Is it the disease itself?
I know at my infusion centre there are always two nurses on, and at least one in the room at all times.
How are you getting on now with the Metho and Cimzia?
 
I had basically the exact same reaction! I stopped Remicade for about 9 months and then tried to restart. 1st infusion went fine, 2nd infusion.. not so much. It felt like someone had reached into my chest and grabbed ahold of my lungs. Terrifying does not even begin to describe it.
 
Unfortunately because you stopped Remicade your body was able to produce antibodies against it. When it encountered it again you got an initial warning, and then your body went 'all out war'.

It's not recommended to stop and re-start these drugs.
 
Sorry to hear about the reactions, I had a similar one with the Remicade and it is very scary! I wasn't given my pre-meds and had a reaction. I've been fortunate enough to not have any more problems as I get my pre-meds at least 20 minutes before starting my infusion.

I hope the methotrexate and cimzia help! Good luck!
 
I've heard a few things happening like that. Usually when you start the medication after stopping. I guess that's not a thing to do...

Glad you are ok though.
 
No, only the biologics - like Remicade particularly, but even the fully humanised Humira.

6MP is an immunsuppressant, which slows down the ability of the body to produce new cells by reducing it's supply of a needed chemical.
 
I had that exact reaction with an cosmofer infusion once. the instant the nurse turned it on, she looked at me and said, Ok, I think we better switch that off! Very wierd and scary experience. She dosed me up with piriton and let me sleep it off.
 
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