Posted 4/6/2009 2:12 AM (GMT 0)
Hi-I haven't written in a long time. I hope everone is doing ok. I need some unput here. I'll post this in the Arthritis and Crohn's message boards. I took Remicade about 7 years ago. It was wonderful for my joints and for the CD. I had a site reaction and my Dr. at the time didn't want me to continue. I've tried most everything out there at this point. I have a new RA Dr. who said she thinks with the proper pre-meds and dosing she could give it to me safely. Well, we did one infusion with no problems until 7 days later. I developed the most unbelievabls case of hives you could imagine. I started vomitting and had fever. Dr. sent me to the ER where they treated the symptoms. I noticed the 2nd joint on my right middle finger seemed extra sore but didn't think much of it since I have RA. Two days later when I woke up, I could not use my hand. The joints were so swollen and unvelievably painful that I could not even brush my teeth. I also noticed the bottom of my left foot getting sore right where one of the toe joints would be. When I woke in the middle of the night and got up, I could put ZERO pressure on my right hand/wrist and now my right foot/ankle. It was extremely swollen. As the next couple days, my knee, my hip, elbows, shoulders, feet, were all affected. I was effectively paralyzed but I could feel everything but the pain was so excruciating that I couldn't move. My husband had to practically carry me and set me on the toilet, pick me up off of it, and even feed me. My Dr. just kept saying that I must be allergic to something and it's not the Remicade because it had been 7 days afterwards when all this started. Then I got another fever. She had me come in and she prescribed me Oxycontin for the pain. She encouraged me to take my next dose of Remicade because she says this is due to the RA not the Remicade and the Remicade will help. Against my better judgement I did it. Within 10 minutes, I had a fever of 103. I had the reddest face and neck you can imagine. I began having trouble breathing. My blood pressure was 110-97. They would administer a steroid and Benadryl via IV and the fever would immediately drop and the BP would go up to normal or even pretty high. This lasted a coupe hours. Obviously this is a reaction to Remicade and I will never take it again. But when my blood work was taken, this is what came up...CRP-260. Sed Rate180. High LIver Enzymes, High Platets. HIgh WBC. A retake last week (2 wks after this happened) my levels are better with a CRP 90, Sed Rate 60, and still high liver and platlets. I am still getting hives and get tightening in my chest. I don't have am internist or family dr. right now because of my insurance changing. I want to make sure I shouldn't be doing anything. She wants me to continue only Methotrexate right now. Any input or experience is greatly appreciated. I've just never felt this badly before. Thanks.