I had my last infliximab infusion yesterday. I've been on it for a year and we have finally admitted it just isnt working like it should. So i rock up to the room to get set up, now infliximab wore off 3 weeks ago so i was not my normal self. The nurses wanted a doctor to look over me to be sure it was just the crohn's. Doctor arrived and was lovely. Listened to my chest ect, i then discovered my CRP level is 74 and usually is about 50. Whoops!
So i get the go ahead for infliximab to be run through. I was on my 3rd double dose so it was being run in over 2 hours. I get hooked up and off we went. For a grand total of 15 minutes.
First i got super hot, then my heart started palpatating. I turned to a nurse and by the time i said i'm really hot my chest was getting tight. The nurse dived over me and stopped my IV, and yanked the emergancy cord. Alarms going off everywhere, and suddenly i had 5 nurses. My chest was really tight, i couldnt even talk cos i had no breath. I went a very sexy beetroot red with a tinge of blue. I think i looked like a really sunburnt smurf! So in comes the crash trolley, an O2 canister bigger then the chairs and i got pumped with more hydrocortisone and chlorphemarine (sp?). Lots of blood pressure checks, and o2 sat checks. Fortunately within 15 minutes my chest started to loosen up, but the nurses were still standing by with a nebuliser to add to the o2 i was already on.
Fortunately i had pretty much returned to normal and was off o2 within 30 minutes of the first symptom.
I had to hang around for a few hours afterwards but i had no sign of the reaction returning. So i returned home, my mom drove me back, and i had some dinner then slept for 12 hours!
I dont write this to frighten anyone, i want people to know that yes reactions are REALLY scary, but trust in your nurses. They will sort you out. They couldnt believe i reacted after a year of it. Still, i'm moving on to humira and am currently awaiting my first delivery!!
I feel 100% normal today. I would like to say a MASSIVE thank you to the nurses at York Hospital MES outpatients, England, for their superb care yesterday. A couple of tins of chocolates are on their way!!
Dx - Crohn's - 2006, Depression = 2010
Currently - infliximab double dose 8 weekly, iron tablets, B12 3 monthly, prenatal vits+minerals
Tried - aza, pentasa, questran
No crohns' surgeries to date, Episcleritis for 3 weeks,
Doing BSc (Hons) degree Equine Science - some support from uni. This year has had to be split in to two. Starting Humira shortly!! fingers crossed this will beat crohn's into submission!! I WILL WIN!
I AM ME NOT CROHN'S!