My Remicade Journey, So Far

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Regular Member

Date Joined Sep 2007
Total Posts : 32
   Posted 9/14/2009 4:54 PM (GMT -7)   
After two years without a remission of my Crohn's, after multiple medications, my doctor decided to let me give Remicade a try.  I don't have insurance, so his office helped me send in the application for patient assistance, and it was approved. Then, my doctor's office searched around to find an infusion center that would donate their services. So I'm  getting the Remicade infusions at no cost to me. I felt so blessed that they went to all that trouble for me.
I had to wait about a month from the time the Remicade was approved until the date of my first infusion appointment. My husband drove me to the hospital (where the infusion center is) and we waited for over an hour. When I got called back, the nurse looked at my chart and asked where my TB test results were. ???  I didn't have a TB test, because it was never ordered. So they got orders from my doctor, then I got both a skin test and a chest Xray, and an appointment to come back on Monday (Sept. 14). 
I was sick all weekend, which is just how things have been lately. I got to the hospital today at 9:45, and it was 11:30 when they finally got the drip started. They gave me 25 mg of Benedryl as a pre-med. I fell asleep, but the nurse woke me every 15 minutes to check my vital signs. about 1:30, I woke up itching. I looked at my chest and arms to find a hivey rash.  I told the nurse, and she disconnected me immediately, and called my doc for further orders. I got 50 mg of
Benedryl and also Solu-Medrol, and had to sit there for an additional hour and a half while the hives faded and my blood pressure came back up.
The nurse had started me at the slowest rate for the infusion, then gradually increased it until I was a maximum rate. That's when I got the hives.
The doctor decided against continuing the infusion, so I got half a treatment. I'm supposed to  hear from them tomorrow about whether I'll try Remicade again in two weeks or discontinue it and go to another medication.  If I wasn't so stoned from all the Benedryl, I'd probably be crying hysterically in disappointment. I was hoping this would be the answer to getting my life back, at least a little bit. 
If they ask me, should I try the Remicade again, or should I accept that I can't use it?
It will all be okay in the end. If it's not okay, it's not the end.
Pentasa, Nexium, Librax, Prednisone, Topamax, Zoloft daily
Canasa, Lortab, Tramadol as needed

Regular Member

Date Joined Aug 2009
Total Posts : 90
   Posted 9/14/2009 6:03 PM (GMT -7)   
O my goodness lady I cannot believe they waited 2 years to offer you the Remicade!!! I think #1, please do yourself a favor and find a new GI. It only took me a few months to receive this medicine, yes it took some nagging because I'm determined to not lose my job and apartment that I've worked so hard for. And dont lose faith, there are other medicines and treatments if you have an allergic reaction to Remicade. ((hugs))
dx w/CD finally in July 2009, currently taking pentasa, entocort, cipro, flagyl, probiotics, celexa, bentyl, biofeedback.
"It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change" Charles Darwin

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