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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Tons of pain in Joints and Remicade


02-15-2013, 12:13 PM   #1
crohnette
 
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Tons of pain in Joints and Remicade

I hurt a ton today. I am on remicade and am half way between infusions which are every 6 weeks. My joints and back hurt like bone on bone pain. It is the wierdest thing. I usually get pain in certain areas at a time but today it is in my fingers, toes, ankles, wrists, every single joint plus entire back is hurting! Any suggestions or reasons why this would be happening??
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Katie
Diagnosed September 2004
Current meds:
Remicade infusions every six weeks
Azathioprine/Imuran 250mg/day
Pentasa 4000 mg or 8 giant blue horse pills
Cymbalta 60mg/day
Trazadone 250mg/day
Tramadol as needed for pain
Prenatal vitamin for overall health not pregnant
Vitamin d3
Probiotics

That's too many!
02-15-2013, 04:25 PM   #2
JudithC
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If you get the magazine, Crohn's Advocate you will learn through last month's issue that you 'may' have something called Crohn's arthritis. For some reason my remicade is not working as well after a year on it and like you I have developed this aching/hurting all over. It even makes it hard to walk and climb stairs. I told GI at last visit and all he did was make my infusions at 5 weeks instead of 6. Ain't working Doc! Will discuss this more thoroughly at my next appt. By the way, my tramadol doesn't help this pain a bit.
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Judy

now:
Remicade
Vitamin D
Vitamin C


tried:
Entocort
Pentasa
Prednisone
03-01-2013, 01:52 PM   #3
ambermeghan
 
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I had the same issue. It went to a Rheumatologist and was diagnosed with crohn's arthritis. They started me on Sulfasalazine and increased my Remicade dosage from 5mg/kg to 6mg/kg. It seems to gradually be improving.
03-01-2013, 02:19 PM   #4
JudithC
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My remi dose is now being increased because the Crohn's is not behaving. If my leg/joint pains continue I will request a referral to a rheumatologist.
03-01-2013, 02:29 PM   #5
araceli
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I hurt a ton today. I am on remicade and am half way between infusions which are every 6 weeks. My joints and back hurt like bone on bone pain. It is the wierdest thing. I usually get pain in certain areas at a time but today it is in my fingers, toes, ankles, wrists, every single joint plus entire back is hurting! Any suggestions or reasons why this would be happening??
With crohn's if you have inflammation your joints hurt. With crohn's you may develop arthritis, With remicade you can have a side effect that is Lupus like symptoms that are suppose to go away after you stop remicade. Not good eh? Hope you feel better soon.
__________________
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
03-01-2013, 11:33 PM   #6
mclavin
 
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I'm on Remicade and I have joint pain, muscle fatigue and soreness. My GI told me that your body builds up antibodies to the Remicade because part of its makeup includes mice proteins (foreign). These antibodies deposit in the joints causing aches and pains. There is also something called serum sickness that can occur. My rheumatologist did a simple blood test to check for this and I came back borderline. Woudn't hurt to discuss with your doctor if symptoms persist.
03-02-2013, 06:59 AM   #7
JudithC
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Why doesn't my GI talk about this? Part of the problem is that I don't understand what is going on with my body.
03-02-2013, 11:45 AM   #8
araceli
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I don't know if you have notice that Doctors go in and want to be out in less than two minutes. So if they tell you something you will be asking questions, so more time they have to be with you. Do your research and have your questions ready. Get your body between he or she and the door. I don't let my Doc. go out until he answers all my questions.
03-02-2013, 12:11 PM   #9
JudithC
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LOL..."Get your body between he/she and the door". Very good idea.
03-02-2013, 12:20 PM   #10
Laurie F
 
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I am feeling the same- not on remicade, but on HUmira and 6mp- am currently weaning down off Entocort ec- which I have been on 2-3 years....Question- I have been searching the internet on this- I have Crohns. I have been on budesonide (entercort ec) for 2-3 years now. Three weeks ago my dr. started to wean me off as my Humira and 6mp seems to have put me into remission. My body has started aching in places I didnt know I had. I went down to 1 pill yesterday, and my hands are cramping and hips ache along with the long bones in my arms and legs....has this happened to anyone else withdrawing off Entocort or budesonide? I dont want to take pain meds...and cant take advil...hot bath soothes me, but not for long....will this go away?
03-02-2013, 04:17 PM   #11
mclavin
 
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I am feeling the same- not on remicade, but on HUmira and 6mp- am currently weaning down off Entocort ec- which I have been on 2-3 years....Question- I have been searching the internet on this- I have Crohns. I have been on budesonide (entercort ec) for 2-3 years now. Three weeks ago my dr. started to wean me off as my Humira and 6mp seems to have put me into remission. My body has started aching in places I didnt know I had. I went down to 1 pill yesterday, and my hands are cramping and hips ache along with the long bones in my arms and legs....has this happened to anyone else withdrawing off Entocort or budesonide? I dont want to take pain meds...and cant take advil...hot bath soothes me, but not for long....will this go away?
You need to get in and see your doctor. Humira did the same thing to me as the Remicade is doing regarding joint pain, etc..
03-03-2013, 08:29 AM   #12
Laurie F
 
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You dont think it's from the detox or weaning off Entocort?
03-03-2013, 11:53 AM   #13
Jeffer
 
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The same thing happened to me when trying to wean off entocort. I went back on the full 9 mg dose and was ok for a week or so and now back with masses of pain.
03-03-2013, 06:13 PM   #14
Laurie F
 
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I am down to just 1 pill (3g) now and after 3 days, joints are a bit better, but I haven't been doing much at all.
03-04-2013, 04:03 AM   #15
Jeffer
 
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I am going to see the Ibd nurse this morning so it will be interesting to see what she says.
05-05-2013, 09:17 PM   #16
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I'm too experiencing crazy joint and muscle pain. Fatigue isawfulas well. Starting to worry it might be drug induced lupus....
05-06-2013, 01:16 AM   #17
Jeffer
 
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Ibd nurse prescribed yet more steriods this time prendisolne and referred me to the rheumatologist. This got rid of the joint pain and I have just come off pred. I still get dreadfully tired but was told that this is just Crohns Stomach pain bad.
05-06-2013, 11:38 AM   #18
mclavin
 
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I'm too experiencing crazy joint and muscle pain. Fatigue isawfulas well. Starting to worry it might be drug induced lupus....
Hi barrett - not worth waiting on this. See a rheumatologist and get the simple blood test now. With many yrs of Crohn's & medication experiences, the one biggest lesson I learned was not to wait, to guess or hope it gets better. You won't regret it. All the best!
05-06-2013, 02:40 PM   #19
Lisa
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Oh crap, crap, crap.....

After reading this thread, and doing a quick search - looks like I will have to talk to my doctor....so far, I have the following symptoms/issues popping up...

Sun sensitivity
joint pain - right wrist/up into arm, lower back (thought it was just my arthritis/sacroilietis acting up)
some fatigue - but that is an almost constant.....

Plus, I still have the spotty (possible) drug-induced psoriasis on my body...which see,ms to have a few new spots that have popped up....
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
09-02-2013, 11:06 AM   #20
Sparkle2012
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I am feeling the same- not on remicade, but on HUmira and 6mp- am currently weaning down off Entocort ec- which I have been on 2-3 years....Question- I have been searching the internet on this- I have Crohns. I have been on budesonide (entercort ec) for 2-3 years now. Three weeks ago my dr. started to wean me off as my Humira and 6mp seems to have put me into remission. My body has started aching in places I didnt know I had. I went down to 1 pill yesterday, and my hands are cramping and hips ache along with the long bones in my arms and legs....has this happened to anyone else withdrawing off Entocort or budesonide? I dont want to take pain meds...and cant take advil...hot bath soothes me, but not for long....will this go away?
When I went off Entacort, I got the arthritis and it never went away. I also started Pentasa.....one of them brought this on. Sounds like the Entacort. I live with it.
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Chronic Stomach pain, Gerd, Anemia. Rosacea, Migraines, Skin Issues
Longterm Prilosec/Antibiotics
Chronic C&D, blockages
Doc:"chubby=not Crohns"
GI #1: Pillcam, DX Crohns Humira ordered
GI#2: NOT Crohns; cancel Humira. pillcam stuck X6 wks! RX Entacort!
11/2012 ER SM bowel stricture resection/GB
GI#3: End Entacort. RX Pentasa! Flu symptoms. joint pain follow-neg RA
4/2013 Prometheus Positive/Crohns
Markers flat post surgery
Chronic Arthritis
No Crohns symptoms
On Pentasa
09-02-2013, 02:39 PM   #21
Jeffer
 
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When I cam off the steroids, budnsole and pred I ached a lot but then had double dose of infliximab and was wonderful for 3 weeks unfortunately I had developed an allergy to it after almost one year. I then had a series of steriod injections to stop the pain while taking methotrexate injections. These are supposed to kick in after three months. In the mean while I am inconsiderable pain from Ibd arthritus.

Dx crohns sept 2010
Cancer sept 2010
Arimidex
Pentasa
Ad cal
Folic acid
Let hydroxide
Methotrexate 25 g
09-03-2013, 09:34 AM   #22
Sparkle2012
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Seems like these antiinflammatory meds bring on the arthritis. They say it's Crohns arthritis but if you had zero symptoms prior.....I blame the meds for activating it. I've researched -- some sciency people should look into this because I find nothing on line.
09-03-2013, 12:46 PM   #23
Jeffer
 
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http://www.patient.co.uk/doctor/Ente...hropathies.htm

You may like to start here.
09-03-2013, 12:52 PM   #24
Sparkle2012
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Thanks Jeffer.
09-23-2013, 01:37 AM   #25
Patricia56
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The thing to consider if you are coming off entocort and having joint pain is that the entocort has been keeping you from feeling the joint pain. It is a powerful steriod and up to 27% can be available systemically.

So you are in steroid withdrawal which can cause muscle and joint pain. And you are no longer taking a steroid which may have been suppressing the symptoms of arthritis.

And if you were on entocort for that long you need to get a DEXA scan right away if you haven't had one in a year. It's not as bad as prednisone but it can affect bone quality in a similar way.
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Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
09-23-2013, 01:37 AM   #26
rollinstone
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I had my second infusion last week n my right knee has been aching more and more frequently
09-23-2013, 05:14 PM   #27
AJC - Australia
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Laurie F

i was on entocort for 5 years.
it is very hard to get off it if you have been on it for a long time, like you have.
I started to try and get off it at 2 years....it took me 3 years to get off it.
here is why.

i was taking 3 per day for years, then would go down to 2 per day for a week or two and then down to one per day....after a few days of one tablet per day i started feeling crappy in the tummy and losing appetite, so i went back up to 2 or 3 per day and started the cycle again.

after a while i was getting down to 2 per day, then one and finally going to zero per day....after 2 days of zero per day i was feeling like the crohns had come back big time!! I couldnt eat and had pain in the guts....so, naturally i went back up to 2 or 3 tablets.

this went on for a LONG TIME.

my doctor (who is brilliant) said that i was experiencing withdrawal effects and I should persist to stop taking it...he said i may feel unwell for a week or two while i got off the entocort. He was right. I got worse and worse, couldnt eat and had a gnarly headache for days......but it did go away, i started to feel a bit better after about 5 days, but had a persistant headache for 2 weeks and runny poo for about 3 or 4 weeks....all the symptoms were NORMAL for getting off it.....your body is addicted to the level or cortisol it is consuming....you body ceases to make certain hormones, this is where the problem lies....the hormones are important for digestion and other things and the long term cortisol injection has told your body to slow down the production of those hormones.....SLOWLY your body will start making them again, but you can expect to feel shitty for a few weeks......batton down the hatches and get some supprt, .

ONCE off the cortisone, god did i feel like a new man!!!!

I feel so good today.

good luck
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