It is so painful to write this. My fingers arre killing me. My arms are soo sore. My legs feel so heavy. My GI SWEARS its not the Remicade, says it's just arthritis and prescribed me Prednisone for a week. I started having EXTREME leg cramps about
5 hours after my infusion last Tuesday. They lessened in about
48 hours, but I still have them a few times a day, they feel like a tightening of calf and charley horse. Then, on Christmas Eve, my right arm started to ache like crazy, then I vomited. I took Darvocets and Tylenol pm which did not touch the pain. (The Darvocet right before bed may have been what made me puke). Christmas day I took more pain killers and then my other arm started aching. Today I woke up with my fingers killing me, thigh cramps, both arms aching. Intense pain. I calledmy GI and he said he has never heard of a reaction to Remicade for more than 24-48 hours and it is just arthritis. My Aunt has Rheumatoid Arthritis so I called her and asked if she really feels this horrible ever. She says she has never felt bad enough to not function, like i cannot shower, drive or anything, she says i need to try to keep moving against the pain. I told her that is not possible due to the fact that I feel like I am dying. GI says the Prednisone should help right away... I just want this nightmare over and if I dont feel better soon i am going to the hospital. Sorry I am not trying to scare the people taking Remicade, I took it about
3 years till this happened. It was after I got the higher doseage I started having small problems and I didn't even think of a tie to Remicade till recent. First it was an extremely stiff neck and pain in Sept. In October it was severe pelvic pain. In November it was extreme joint pain. Now all these pains. My GI does agree that I had a reaction and will no longer take it but I also feel like he thinks I am crazy. I just wanted to share this and anyone whowants to add anything I appreciate it being as I cant do much else at this time.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007:Increased Remicade dosage-660mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia
Current meds: Remicade 660mgs every 6 wks ( had a reaction will start Humira in 6 weeks) Lomotil, Darvocet, Clorazepate