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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Remicade and JOINT PAIN


11-02-2009, 05:54 PM   #1
bella_sky
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Remicade and JOINT PAIN

Had my 3rd infusion last Tuesday, each infusion seems to make the joint pain progressively worse. I ended up in the ER Tuesday night with so much pain I couldnt think and they gave me a few Dilaudid to tie me over. Since then I've been struggling with gettingout of bed, etc etc. And the Crohns pain is coming back, losing control of my bowels again. WTF?!?!? The State and govt dont even want to interview me for disability. I cant work more than a few hours a day, and when I do that, I come home and cant move for HOURS until the pain gets better. I'm sorry if it sounds like I'm whining, I'm just lost.

The ER did an X-ray to see if I have Akolysing Spondilitis (Sp?) and I just picked them up today from the hospital to overnight to my Hopkins doc for tomorrow. If I dont have this, idk where to turn... Should I see a rheumatologist, a pain management person, or just wait for the GI to help? My PCP doesnt want to interfere with the GI care so he doesnt want to talk to me. I've started taking Calcium and Vitamin D supplements incase that was the root of the pain but its not working and I'm running out of pain pills to keep me functioning.

I'm sorry this is long, thanks for any advice on a direction to go in you may have.
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11-02-2009, 08:18 PM   #2
Rhonda
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Whiners Unite! Sorry you're having such a tough time Bella. I remember my son having terrible joint pain while on Remicade too. I don't have any advice for you.. Just a friendly word from someone who cares.

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11-02-2009, 08:33 PM   #3
Jennjenn
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Hi Bella Sky, you are not whining. I am on Remicade and have joint pain but not as bad as yours. Sometimes I wake up and feel like I cannot move.
I went through difficulty also for disability. I would recommend getting an attorney if you are trying to get long term disability. I applied for disability after realizing that I am not able to work and was in and out of the hospital and had too many symptoms that affected my every day life to function normally. I got sent to the states disability doctor after having 3 surgeries and 7 hospital stays at that point and still got denied. The doctor for the state told me to zip up a dolls dress with my right hand and button the pants on the doll with my left hand. After I did this I realized how pointless and ridiculous the disabilty system is. I told her I am in pain just had a few surgeries and feel like passing out here and that my arms and mind work just fine, she told me to go have lunch, looked at my scars and told me yeah you will be fine after lunch. 3 weeks later I got my denial letter in the mail and decided to go to an attorney. The attorney got me approved for disability but it did take a lot of time. I wound going back to work and having a lot more complications and they faught for me to get approved. I have been on disability for almost a year now. I would recommend to anyone to get an attorney if they are trying for disability.

Last edited by Jennjenn; 11-05-2009 at 07:50 PM.
11-03-2009, 02:21 AM   #4
shazamataz
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Hi Bella,

I have no experience with this, so can;t offer any words of wisdom, but just wanted to send big ((((HUGS)))) and say hang in there!
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11-03-2009, 02:56 AM   #5
CrohnieCarolyn
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I had to go off Remicade my joint pain got so bad and now I am on Cimzia and have NO joint pain - The doc. wanted to send me to a rheumie too but I now KNOW it was the Remicade...just my two cents worth and I have heard that you are denied always the first time for disability for Crohns - nice huh? I would get an lawyer too...
11-05-2009, 02:39 PM   #6
bella_sky
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Thanks for the advice My joint pain is so excruciating now I'm constantly crying and had to get my mom involved, she's much more able to express how bad I am to get someone to do something here. They came to the conclusion I do not have Ankolysing Spondilitis but more tests need ran b/c there is definitely something there. I'm looking to hear from a Rheum doc today to get an appt setup. I'm going to start downing wine shortly to help dull the pain, its so unbearable!! How do you all deal with this pain?!?!
11-05-2009, 02:49 PM   #7
Rhonda
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I had terrible joint pain from the Pentasa, my son got it from his Remicade. You're taking both so it's tough to tell if it's from your meds or yet another underlying cause. Sorry you're having to deal with so much pain... we know it sucks. *hug*
11-05-2009, 03:29 PM   #8
CrohnsHobo
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I wonder if the Remicade makes a pre-exhisiting joint condition worse/brings it out in people. I have been on remicade for years and at a large dose at 4 weeks for a few months and have had no joint pain.

Hope they can get you fixed up soon. Pain is no fun.
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11-05-2009, 03:42 PM   #9
beth
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Sounds like you need to get some proper painkilling patches from your GP/Doc's. I just got some BuTrans patches for back and joint pains, and they seem to be pretty good. First time in nearly a week I can stand up and not be stringing multiple f words together!
11-14-2009, 01:19 PM   #10
bella_sky
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I have a tumor in my spine. They need to biopsy, next appt is Wed so will keep you all posted. As of right now it seems though that this may be completely unrelated to Crohns and/or Remicade treatments, just bad timing I guess. Thanks for the support and I guess never rule out that the joint pain might be completely unrelated...
11-14-2009, 02:18 PM   #11
Jennjenn
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Aww Bella I am sorry to hear that. I do hope that everything goes well with the Biopsy and I hope in the mean time they were able to alleviate some of your pain.
11-14-2009, 03:03 PM   #12
shazamataz
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Ugh Bella, lets hope you get that sorted ASAP!

((((HUGS))))
11-17-2009, 05:05 PM   #13
bella_sky
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tumor is size of golfball in my spine. and non crohns, non remicade related probably so i prolly shouldnt post here. but i'm a little scared. biopsy tomorrow, 1 inch incision right above my butt crack... cant believe this all happening same year as crohns dx. so glad i can eat oreos again without paying for it so much anymore. still cant eat most foods but oreos make me happy and i need to gain weight back. ugh. please learn from me -- dont overestimate emergency rooms, and please do insist on MRI.
11-17-2009, 05:50 PM   #14
D Bergy
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We already have a messed up immune system. When you suppress it using medications, you basically are at risk of having other pathogens take residence in your body.

At least some forms of Arthritis are caused by bacteria. Now that they have little to stop them, they multiply causing more problems. My wife's prior Arthritis is/was caused by lyme bacteria, but that is only one of the offending bacteria that can cause this.

Some people can get away with some immune system suppression, and others can not get away with it. It all depends of the individual variables of the individual.

In my unprofessional opinion, you are not going to get away with it. You may do better on Low Dose Naltrexone, since it does not suppress the immune system but boosts it.

Just another opinion.

Dan
11-17-2009, 07:44 PM   #15
shazamataz
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Oooh, bella, I hope it goes well!
11-17-2009, 11:10 PM   #16
CanadianBella
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I just had my first infusion of Remicade today so I havent noticed many side effects yet. During my infusion the arm I had my IV in nuckles, shoulder and elbow started hurting and the nurse said it was from the infusion. But thats it so far.
01-14-2010, 06:08 AM   #17
kristyn
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When I first start Remicade 10 years ago I had the infusion every 8 weeks with no problems. After my 4th treatment- I stopped breathing 10 minutes into it. Now I get Decadron and Benadryl via IV first and I and get treatment every 6 weeks. I had to move to Fridays because I am so sick for about 24 hours following treament. 2 hours after treatment I start to get muscle pain in my back- then aches and pain all over my body. I take Percocet and Soma to make it through the night and about 3 hot baths. Always have sweats and chills and about 75% of the time vomit the next day. For about a week afterwords I feel like I am recovering from the flu.
08-26-2011, 04:22 PM   #18
danyboy
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Hi everyone,

I have been taking remicade for crohns for the last 5 years. About 2 years ago I developed such terrible pain in my knees that I had to start walking with a cane and I would litterally have to crawl up or down any staircase. This lasted for quite some time and my GP and specialist said "you're on the strongest arthritis meds so there isn't anything else we can do for you". After a while a bought a treadmill and tried to follow the GPs advice and try to build more muscle and stay active. It seemed to help. Then the pain seemed to move to my right ankle which made using the treadmill impossible. I never thought Remicade could be the cause of the pain until 3 weeks ago.
After a mini-stroke, the specialist said to get off Remicade because it might be the cause. I spent 3 months without Remicade and suffered many flare-ups that were "doused" with runs of Cipro and Flagil (antibiotics). Surprisingly, the joint pain was gone but I didn't realize it at the time because of the pain from the flare-ups.
I just had a dose of Remicade 2 weeks ago and the joint pain is back with a vengence. This can't be a coincidence.
I am switching to Humira in a few weeks and I hope the joint pain won't come back...
Is anyone on Humira and suffering from similar joint pain experienced by those on Remicade?
09-02-2013, 11:17 PM   #19
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Hi everyone,

I have been taking remicade for crohns for the last 5 years. About 2 years ago I developed such terrible pain in my knees that I had to start walking with a cane and I would litterally have to crawl up or down any staircase. This lasted for quite some time and my GP and specialist said "you're on the strongest arthritis meds so there isn't anything else we can do for you". After a while a bought a treadmill and tried to follow the GPs advice and try to build more muscle and stay active. It seemed to help. Then the pain seemed to move to my right ankle which made using the treadmill impossible. I never thought Remicade could be the cause of the pain until 3 weeks ago.
After a mini-stroke, the specialist said to get off Remicade because it might be the cause. I spent 3 months without Remicade and suffered many flare-ups that were "doused" with runs of Cipro and Flagil (antibiotics). Surprisingly, the joint pain was gone but I didn't realize it at the time because of the pain from the flare-ups.
I just had a dose of Remicade 2 weeks ago and the joint pain is back with a vengence. This can't be a coincidence.
I am switching to Humira in a few weeks and I hope the joint pain won't come back...
Is anyone on Humira and suffering from similar joint pain experienced by those on Remicade?
I feel your pain!
09-07-2013, 11:51 AM   #20
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So the dr placed me on 30mg of pred, along with a zyrtec and Benadryl the day before my 3rd infusion and things felt better. The day of the infusion (yesterday) I had to take another 30mg of pred and a Zyrtec and during the infusion I was given Benadryl. I felt pretty darn good. Today I wean down to 20 pred along with Zyrtec and Benadryl. We will see what happens from there. I slept really good last night and feel pretty good today, just hate taking steroids.
08-22-2014, 09:47 AM   #21
Dani_leia
 
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I realize this is an old thread, but I thought I'd put in my two cents worth anyhow. I was diagnosed in 1992. I started Remicade in 2003. I had surgery in 2007. I've had good results with the Remicade keeping me in remission, feeling like a normal person, especially since the surgery.

Now things are changing. I've been having joint pain, especially in my hands and feet for the past couple of weeks. Thank God it's only an issue in the morning and in the evening. Today is Remicade day. God-willing I'll get a respite on the joint pain.
08-29-2014, 03:15 PM   #22
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I have been on Remicade for a year. I am at every 6 weeks and almost a double dose for my weight. The positive is that my gut is good. Not perfect but much better than before the Remicade. I had a reaction on my second round. Really bad flank pain and joints hurt. I get pre meds now solu Medrol piggy back and 100mg Benadryl. 4 days after my last infusion I ended up in the ER with chest and flank pain as well as my joints were on fire. I was given pain meds and a medrol dose pack. The extra steroids seemed to do the trick. I get hives like crazy still and have for quite a while. They want me to see an allergist.
The GI did the Prometheus Labs anserifx test and my labs came back fine. Normal amounts of Remicade for my cycle and no detectable antibodies. So now what? I was told that if they infuse me slower that I should not have the reaction again. I’m so sick of my joints hurting but the meds working! I feel stuck.
Here is a link to the test. Those that are suffering from nasty side effects may consider the test to see if you are metabolizing the drug correctly and if you are building antibodies…
http://www.anserifx.com/
08-29-2014, 03:35 PM   #23
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I realize this thread is a bit old, but I too wanted to add something. I was experiencing TERRIBLE joint point after about 1 year of being on Remicade. It was so bad my doc prescribed me heavy duty pain meds and that didn't even touch the pain. I was unable to walk up and down the stairs, had to take weeks off of work, it was just getting out of control. Seriously, I was crying in misery and pain. Finally I bit the bullet after not being able to get any answers from my gp or GI so I flew out to Mayo in Rochester and wouldn't ya know, a simple blood test turned up that I had developed antibodies to the Remicade. I was also testing positive for drug-induced Lupus. Whooooooo. Rough few months. High dose of pred and pain meds have gotten me through. My last Remicade infusion was at the end of June (where my rheumatologist actually doubled the dose ekkkkk!) so things have been slowly improving since stopping and letting it get out of my system. But it was a terrible experience and it all started will a little pain in my toe. Would have never thought things were going to get so bad. Hope you find some relief!

Ah, after re-reading a little better I see that the first poster did indeed have drug-induced Lupus. There ya go! Sorry you had to go through it. All be well!!
12-09-2016, 12:33 AM   #24
aypues
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I had a double dose (10mg/kg) of Remicade today. I'm hoping it helps my joint pains! We tested for antibodies to it and I have none. Kind of worried the drug is causing the joint pains based on what other people above have experienced...i hope not though, it has been really working for the Crohn's.
01-16-2017, 04:50 PM   #25
aypues
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I had a double dose (10mg/kg) of Remicade today. I'm hoping it helps my joint pains! We tested for antibodies to it and I have none. Kind of worried the drug is causing the joint pains based on what other people above have experienced...i hope not though, it has been really working for the Crohn's.
I found out the joint pain I was having was from a little too much IV iron! If you have an overabundance of iron your immune system sends out macrophages that take it up and it gets deposited in the joint spaces and throughout the body giving you temporary arthritis-like symptoms for up to 4 months; you have to wait for the macrophages to die and their lifespan is about 120 days. So glad I figured it out and it wasn't from the Remicade because it's been working beautifully.
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