I feel like I am dying, I think it's from the Remicade?

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.

Princess, I'm taking Remi too, and have for 2 1/2 years without any kind of reaction so far. Please check with your pharmacist and make sure that the other meds you are taking aren't interacting with each other. It may also be arthritis, but gosh, I'm a little worried about your condition and pain. But my nephew has the same arthritis you do, and he has the swelling of the hands and terrible joint pain.

Sorry you are in so much pain Princess''

I found this pamplet on Remicade
''Allergic Reactions ''
Some patients who have been taking remicade for Crohns disease have had allergic reaction 3 -12 days after receiving thier remicade tratment . The symptoms of this type of delayed reaction may include fever, rash, headache , and muscle or joint pain . Call your doctor right away if you develop any of these symptoms or any unusual symptoms such as difficulty swallowing.


NERVOUS SYSTEM DISORDERS
There have been rare cases where people taking remicade or other TNF blockers have developed disorders that affected their nervous sngesystem . Signs that you could be having a problem include ..changes in your vision ,,weakness in your arms and /or your legs ,,and numbness or tingling in any part of your body


hope you fill better.

Thanks for the responses.  I do feel that since my Remicade doseage was increased I have had the worst body pain in my life.  I have had leg cramps and horrible pains from my rectal ulcer, but they can't even come close to this pain I have experienced.  It just seems too intense to be the starting of Arthritis at 27 but I may just be fooling myself.  I am sorry pottygirl, that is what I went through last night, I couldnt even get off the tiolet without my husband lifting me.  And he was massaging my joints and when he touched my thumb, tears came out, I wasnt crying, it was the pain... I am sorry you go through that.  One thing I have noticed is the pain gets worse through the day and spreads to more places and I feel stiffer at night.  Also on the first day of my infusion when I had the lovely stabbing charley horse sensations, my hands went numb.  My GI said it was probably cause I was hyperventilating.  UGH sometimes I want to strangle that guy.  When I called him about the severe pains he said happy new year when i was hanging up and i said yeah right and cried.  Sometimes they can be so insensitive.  I told him I thought the Remicade may have caused that joint pain and he said well give it one more shot.  I was like at the high dose still?  I am scared.  He said Yeah the full dose, we'll see what happens.  Yeah, he didnt have to spend Christmas drugged up and unable to move or play with his kids in extreme pain and suffer even worse the next day.  Sometimes I wish people could spend ONE DAY in my life.  I wouldn't wish any more suffering than that one day, but still.  They have no idea! 

i would recommend getting a second opinion if you can and also lowering your dose of remicade. im sure things will get better for you in time. i had killer arthritis all throughout my body last year and could barely move, how i got to work and continued with life still baffles me but i guess we just continue on and do what we have to do. stay positive if you can and keep asking questions and trying things. also rest as much as you can to help your body heal. try deep breathing exercises too and consider lowering your dose if you think you might be having a reaction to the remi.

I'm sure this isn't going to be particularlly helpful, but once in the fall I got a strong salty taste in my mouth for a few days and, figuring I was retaining too much sodium due to Prednisone, went on a mission to eat as little sodium as I could until the taste went away. Well, I must have overdone it, because one night I woke up with extremely painful leg cramps - the muscle in the front of my lower leg had seized up and I couldn't undo it. Anyone, I concluded it was an electrolyte imbalance. This happened another time after a week of severe diarrhea, I think for the same reason.

Hey Princess, I was thinking about you and hoping you're feeling better, so I wanted to check in. Has the pain subsided at all? I definitely think you should get a second opinion. Are you someplace where there is a good medical center specializing in IBD? If so, maybe try there, as my experience (from living near both Duke and UNC) is that the big hospitals have more experience with tricky cases like yours, so they have may seen this sort of symptom before like your pain, and may have a better idea than your current GI as to how to handle it. Also, I hope I didn't sound insensitive when I said it might be arthiritis in one of my earlier posts. I just didn't want you to give up on remi if it was helping. but I definitely agree with whoever wrote on here that you know your body best and should listen to it, so if you think it is the remi, go for a second opinion. you shouldn't have to suffer like this. feel better soon and keep us posted.