Re: remicade infusion today - (to Kim from Joan)

[Guest guest]

Oh Kim ... why can't anything go right for you ... poor baby. Once again, I'm so sorry things did not go as they should have ... siiiggghhhhhh. Well ... maybe -- now -- the dr. will agree to the cytoxan simply because he has no idea what else to do ... who knows, though.

Did the dr. say anything about taking MTX with the Remicade so that you didn't build up antibodies to the Remicade? Are you taking MTX now? If I recall, you have not been on any type of immunosuppressant for a while?...

I need to start praying much, much more harder for you...

With love and sadness,

Joan

Well - so is my luck. I had my second remicade infusion today, or tried to have it. Within 15 minutes of starting the infusion I had a really bad allergic reaction to it. It started with severe pain in my chest and shortness of breath and lungs wouldnt move at all then the pounding heart and the awful taste in my mouth and severe chills and some shivering. They did at least act very quickly because at least I was talking to the nurse at the very moment it happened thank god for that. But the thing is they administered whatever they did to make it okay and after 40 minutes or so the team of neuros, against the ers drs insistance, decided to try and give me the remicade again with a higher dose of iv steroids to see if it would help me tolerate the medication. within a couple minutes the heavy heavy awful chest pain started again and the terrible taste in my mouth and the stopped the medication infusion immediately. it was a terrifying event. i thought i was going to die to be honest. i dont think i have ever been more frightened.

i still feel horrid and have some troubles. things didnt go well with the drs either. long sotry im not up for telling.

and now i dont know what i will do for medication.......... back to square one.

love to you all,

kim

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