Has anyone here had horrible body pain after Remicade?

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princesscolon
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Date Joined Apr 2006
Total Posts : 733
   Posted 12/26/2007 11:07 AM (GMT -7)   
I am praying that the Remicade is causing the hell I have been through.  I have never had these pains ever and suddenly they are attacking me.  My doctor says I have develored arthritis but I dont believe him.  This pain is excruciating.  Has anyone else had this after Remicade?  Ever since I got put on a high dose of it I feel like my body is falling apart.  I am never taking Remicade again.
Adrienne,27
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


Ducky
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Date Joined Mar 2005
Total Posts : 3199
   Posted 12/26/2007 5:44 PM (GMT -7)   
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
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
 
 


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 12/26/2007 7:36 PM (GMT -7)   
Make your doctor do the Prometheus Infliximab (Remicade) HACA test. It will tell you if you've built antibodies, joint pain is one of the many symptoms. I never had joint pain until I went on Remicade.
Judy
Crohn's Disease   
 
 
 


princesscolon
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Date Joined Apr 2006
Total Posts : 733
   Posted 12/26/2007 8:30 PM (GMT -7)   
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.

Adrienne,27
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


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 12/27/2007 3:50 AM (GMT -7)   
Hi Adrienne,
It sounds like you have serum sickness. I noticed you were are on Remicade 3 years ago. Once you stopped the Remicade 3 years ago and been off it. Your body has build up antibodys to the Remicade. Which is the serum sickness you are having.

teddybear
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 12/27/2007 8:33 AM (GMT -7)   
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.
Judy
Crohn's Disease   
 
 
 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/27/2007 9:14 AM (GMT -7)   
Dear Judy, that is frightening that it can cause other autoimmune diseases. I have heard of drug induced lupus, but not anything else. Teddybear, I want to clarify that I never stopped taking the Remicade. I always took 400 mgs every 8 weeks till this August my doctor switched me to 700 mgs every 6 weeks, that is when I started to feel sick but I have never missed a dose.
Adrienne,27
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


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/28/2007 6:42 AM (GMT -7)   
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
 
Arthritis Forum Moderator & Co-Pilot
Active Severe Rheumatory Arthritis. AS. Crohns Disease. A.Chiari Malformation. MVP & Tricuspid Valve Prolapse. Kidney Stones (oh joy). 
Meds: Remicade 600mg Q3weeks; Intra-articular knee injections; 6MP; Mesalamine; Prednisone; Entocort; Meclizine; Azithromycin; Tigan; Reglan; LidoDerm; Diazepam; Diclofenac; Dilaudid; OxyContin. 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/28/2007 9:15 PM (GMT -7)   
Wow, Erin, I would be terrified to go back on Remicade after this.  You are brave!  I am concerned enough about trying Humira now.  I would like to know your experiences with Humira and Embrel and why you aren't taking them any more.  And yes, the pain was like a nightmare and is still not completely gone.  I give you credit though.  I really don't think I could ever take a chance of experiencing this again.

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,ulcer shrunk in 3 months August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis? & Fibromyalgia Current meds: Remicade 700mgs every 6 wks ( had a reaction will start Humira in 6 weeks) Lomotil, Darvocet, Clorazepate, Proctofoam HC, Back to Prednisone again :( for joint pain


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/29/2007 9:19 AM (GMT -7)   
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!
Arthritis Forum Moderator & Co-Pilot
Active Severe Rheumatory Arthritis. AS. Crohns Disease. A.Chiari Malformation. MVP & Tricuspid Valve Prolapse. Kidney Stones (oh joy). 
Meds: Remicade 600mg Q3weeks; Intra-articular knee injections; 6MP; Mesalamine; Prednisone; Entocort; Meclizine; Azithromycin; Tigan; Reglan; LidoDerm; Diazepam; Diclofenac; Dilaudid; OxyContin. 


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 2/25/2008 12:05 PM (GMT -7)   
I took Remicade for over a year without any reactions and then, about 3 days after a treatment, all of my joints started aching so badly.  I ended up having allergic reactions to it after another treatment or two, even after premedicating, and it lost it's effectiveness.  Decided that it wasn't worth being hospitalized for 19 hrs to receive the infusion.  Anyway, the joint pain never went away.  I started having joints swell and ended up on crutches for about a month straight.  Rheumatologist supposedly checked to see if it was "medication induced lupus" but was told I was negative for that, that it was just "Crohn's related arthritis."  Have been suffering with it for 1 1/2 years now and am still convinced that it was caused by the Remicade.  Am now participating in a clinical trial that is for both Crohn's and RA (Cimzia) and it seemed to help with the joint pain until winter came.  Anyway, regardless of what the doctor's say, I really think the Remicade caused my arthritis. 
...rejoice in our sufferings, because we know that suffering produces perseverence; perseverence, character; and character, hope.   Romans 5:3-4


LovesAmerica
New Member


Date Joined Oct 2014
Total Posts : 4
   Posted 10/1/2014 9:43 PM (GMT -7)   
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.
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