Has anyone here had horrible body pain after Remicade?

Hey Adrienne.. how long were you on Remicade? Is it the serum sickness they have talked about with this? What type of pains are you having? I've not been on Remicade, but there are a few here who are on it.. they will be by shortly to chime in I'm sure.. hang in there and let us know how you are doing

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 a stabbing 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 called my 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,

My doctors didn't believe me either until I made them do the Infliximab test and saw a specialist in LA that has done research on Remicade. He told me it was a classic case of serum sickness.

It took months for the joint pains to stop, and now a year later I'm having them again. I've heard it can cause other autoimmune diseases, now I'm being tested for them.

hi & best wishes w/ your new therapy.

regarding remicade, i've been on it for about 16 months now. since august i've been on 600mg every 3 weeks.

i use 6mp along with it.

i went through serum sickness in April and it was AWFUL, it felt like i was really going to die.  felt like the most severe flu ever...couldn't MOVE not even to go to the bathroom! and leg & muscle PAIN!!!!!!!

my doc didn't want to pul me off of the remicade & i really did not want to go off of it either as i've already put in 2 years of Enbrel & 2 years of Humira.

 

he has me "pre" Pre-medicate for Remicade to ward off serum sickness.

so 4 days prior infusion i'm on 50mg benedryl daily plus 20mg prednisone and then the same exact meds "post" infusion for 4 days.

it works like a charm.

 

best wishes & good luck

erin

 

hey princess,
the RA i have went without any sort of treatment for about????....mmmm....about 7 years. after a DX i saw a specialist at the NYC hospital for special surgeries...he suggested the TNF meds.
1st started with Enbrel...after about 4 months on Enbrel the lung problems associated w/ RA i had improved quite drastically. the joint pain?...ick, the RA was still out of control. added a bunch of dmards & stuff.
so i said i'd stick ot out 2 years...
i had only very slight joint pain improvement w/ Enbrel. and after 14 months THAT effectiveness seemed to dip.
onto Humira. Humira helped a lot actually w/ the Crohns issues. small improvement w/ RA flares. but still; after 12 months it seemed to plateau in how it worked.
next step was Remicade...this actually helped the RA in the shoulders & elbows; not helping too much w/ the knees which is the killer part.

basically i stopped enbrel & humira because they weren't strong enough to control the RA in this case.

even now w/ the remicade, at 600mg every 3 weeks...i can actually feel the joints getting worse about 5 days before the next treatment.

keep truckin' on!

60 year old female - Diagnosed with rheumatoid arthritis in 2013. I'm currently on disability, and my Humana Insurance will cover 33% of the cost of Humira which makes my cost around $500 per month, cannot afford this, so my Rheumatologist suggested Remicade infusions.

I also had the same experience with Remicade infusions. I first started Remicade in August of 2013; the first two infusions were fine, no pain and no discomfort of any kind. My psoriasis was beginning to clear up, and my rheumatoid arthritis was not as painful. My third infusion was in the morning of September 2013, by late afternoon, I was taken by ambulance to the hospital. I couldn't walk, my knee's hurt so bad, it felt like someone was hitting them with a sledge hammer. I had never in my life experienced such pain. When I got to the hospital, I was running a 104 fever, but I was not sweating nor was I delirious. Because of the fever the doctor admitted me, and I spent 3 days in the hospital going through various test, but nothing showed up that would explain the excruciating knee pain or fever. So the doctor said it had to be a side effect from the Remicade. I stayed off of Remicade for a full year out of fear that I would experience the same excruciating knee pain. During that year, my psoriasis and rheumatoid arthritis were really getting bad, so on the morning of September 30, 2014, I started back up with the Remicade infusions, and I was fine the rest of that day, until the next morning. My wrist began to hurt with just the slightest movement, and my fingers are getting numb and painful to the point I cannot hold anything in my hands. I didn't associate this with the Remicade until I started to research the side effects on the internet and happened upon this website which I am so thankful I found. Tomorrow morning, I will call my rheumatologist and explain what is happening and go for there. I will continue to update this post.

I am a 52 try old male.
These posts concerning the horrible side effects of Remicade are both troubling and comforting.
I am experiencing terrible rheumatoid type pain in my neck, shoulders, hands, fingers and knees.
This is dehabilitating and horrible. No one should go thru this in order to "solve" a separate medical issue. I was diagnosed with Crohns/Colitis about one year ago. I had 10 inches of my colon removed 9 months ago (thinking I had a cancerous tumor, which I did not). Immediately was put on Remicade. Infusions seemed to help the Crohns a little, but certainly did not solve the flare ups. I was told by my GI to delay my 3rd or 4th infusion due to an upcoming shoulder surgery. Two weeks after the delayed infusion I began experiencing the horrible joint pain in my neck, shoulder, hands and fingers. After the surgery, i started the infusions again, not yet linking the joint pain to the Remicade. I asked my GI if there was a connection between the terrible pain and discomfort and the Remicade. He quickly dismissed any connection. The pain has continued. I have refused my next infusion. My GI's solution is to pump me full of different drugs (Humira). The GI office seems to not want to even address these awful and completely dehabilitating side effects.
I have refused the Humeria until I can get these rheumatoid type symptoms controlled. I'm taking a medication holiday! Of course I am told I am putting my self at risk fur colon cancer by not continuing the Remicade or Humeria.
How long will these pains remain after going off the Remicade? Has anyone found a way to reduce or eliminate these pains? Is there a researcher out there who will address these side effects?
I'm all ears at this point!
Phil