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Crohn's Disease Forum » General IBD Discussion » Joint pain on Remicade


06-08-2017, 03:46 PM   #1
More Than Pickles
 
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Joint pain on Remicade

Looking for some advice..... I've only been diagnosed with Crohns since 10/16, at age 43. I had symptoms for three years. Fortunately, I was able start Remicade in November, receiving infusions every six weeks. Recently my joint pains and muscle aches, in addition to general ongoing fatigue has increased to a very concerning degree. Very painful to the point of immobility. I have blood work tomorrow and an appointment with a rheumatologist in a few weeks. My question is this, is this normal? While on Remicade to still have joint pain related to inflammation? Assuming that's what's going on, not something else, have others had the same issues? What did you do to relieve your symptoms? I'm on all the supplements out there (fish oils, magnesium, collogen, turmeric, etc). What medications, prescriptions, helped your joint pain?
06-09-2017, 08:19 AM   #2
JaimeM
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yes i know several people that got joint pain with remicade. I used a lot of heat. I'm not sure why but I've been doing a ton better lately. I'm still on remicade. The only thing that's changed is I started drinking kombucha. So i'm not sure if I was low on a vitamin or what. But I really haven't been having pain of any sort. Crohns has been in a good place. (I even risked a little popcorn last night! hoping that doesn't bit me in the butt haha) But yes, heat was the best medicine. If you can go sit in a hot tub, that helps a lot. Yoga is good too. The stronger you muscles are the more it takes off the strain on your joints.
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Diagnosed Terminal Ileum Crohns 2008
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Back to Remicade and added Azathioprine 2016
06-09-2017, 08:48 AM   #3
More Than Pickles
 
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Thank you so much for that. I will increase time on the heating pad and baths.
06-15-2017, 01:04 PM   #4
paddywack
 
Join Date: May 2017
Location: Minnesota
Thank you so much for that. I will increase time on the heating pad and baths.
I'm approaching 2 years on Remicade and the joint pain started in the past few months. it really amps up sometimes, especially if I overdo it.

My primary doc is sending me to a rheumatologist, but my labs aren't usually very helpful, so I don't know what good that will do.

But YES on the heating pad! I've risked some ibuprofen when it gets really bad.

Good luck!
06-15-2017, 01:12 PM   #5
More Than Pickles
 
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I completed my blood work with my GP ahead of appointment with rheumatologist, just learned I am positive for RA factor, first time this has been indicated. So I'm guessing I will be adding methotrexate or similar to Remicade. Since having my infusion two days ago, joint pain has decreased, proving further to me that it's all inflammation related. Ugh Crohn's!!
06-15-2017, 01:13 PM   #6
my little penguin
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Spondyloarthritis is common with Crohns
It causes migratory joint pain

It is seronegative so bloodwork doesn't tend to show anything



Enteropathic arthritis, or EnA, is a form of chronic, inflammatory arthritis associated with the occurrence of an inflammatory bowel disease (IBD), the two best-known types of which are ulcerative colitis and Crohn's disease. About one in five people with Crohn's or ulcerative colitis will develop enteropathic arthritis.
The most common areas affected by EnA are the peripheral (limb) joints and, in some cases, the entire spine can become involved, as well. Abdominal pain and, possibly, bloody diarrhea associated with IBD are also components of the disease.

From
http://www.spondylitis.org/Enteropathic-Arthritis
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06-15-2017, 01:21 PM   #7
paddywack
 
Join Date: May 2017
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Spondyloarthritis is common with Crohns
It causes migratory joint pain

It is seronegative so bloodwork doesn't tend to show anything


From
http://www.spondylitis.org/Enteropathic-Arthritis
THANK YOU for that! My primary doc had a parent with CD and her dd has RA. So she takes me seriously even when I feel like a hypochondriac nutcase.

They must have ways of diagnosing this stuff, then? If labs won't show it, etc.

I'm not in enough pain to need painkillers, thank goodness. It sounds like trying to get pain treatment is a nightmare lately.

But if it's caused by inflammation, the remicade should help it? And I don't think I've noticed that. Huh.
06-15-2017, 02:00 PM   #8
my little penguin
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Ds was on humira when he was dx
They needed to increase the humira and add mtx to help his joints
A trained rheumo can feel /see the inflammation in the joints
Some use MRI as well
Damage takes decades to show (10 years ) so not very useful

Tagging Maya142
06-15-2017, 05:56 PM   #9
Maya142
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Spondyloarthritis is pretty common with Crohn's. Both my daughters and husband have it, and my younger daughter also has Crohn's.

Lower back pain, morning stiffness and pain that gets better with movement and worse with rest are generally signs of SpA. Any joint can be involved, but it's often the SI joints, hips, knees and heels. But really, it can be any joint, including fingers and the jaw.

Generally, if x-rays are negative, an MRI is used to diagnose it. As MLP said, x-rays only show damage which can take up to 10 years to show up. An MRI will show inflammation.

Plus of course, a clinical exam and blood work also help. It's seronegative, which means the Rheumatoid Factor/ANA are usually negative, but there is a gene associated with it, HLA B-27, which is often positive.

Plus some people have elevated CRP/ESR, though those can be negative too.

Meds like Sulfasalazine and MTX are usually added to a biologic to help with pain, or upping your Remicade dose may help.

Heat and ice will help while you are waiting. Stretching and gentle exercise (swimming or walking) also will help.

Good luck!!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
06-15-2017, 08:08 PM   #10
paddywack
 
Join Date: May 2017
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I did 4 months of methotrexate before the remicade and it was AWFUL. I felt like I'd been run over by a truck most of the time.

I hope there's another option.
06-15-2017, 08:10 PM   #11
Maya142
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There are several tricks to help with MTX - upping folic acid, switching from pills to injections (or vice versa), adding Leucovorin, Zofran for nausea etc.
06-15-2017, 08:23 PM   #12
paddywack
 
Join Date: May 2017
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There are several tricks to help with MTX - upping folic acid, switching from pills to injections (or vice versa), adding Leucovorin, Zofran for nausea etc.
I was on folic acid.

I have dysphagia, can't take pills so I was on injections.

Ugh. I guess I'll stop worrying until I know what to worry about.

Thanks for the info!
06-15-2017, 08:23 PM   #13
BlueSky
 
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I had tremendous and very strange join pain on Remicade. It was an electric feeling that I haven't experienced as arthritis. Perhaps it was neurological. It stoped when I stopped Remicade.

I don't know why "More than Pickles" is so charming as a screen name, but it is.
06-15-2017, 08:28 PM   #14
Maya142
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I was on folic acid.

I have dysphagia, can't take pills so I was on injections.

Ugh. I guess I'll stop worrying until I know what to worry about.

Thanks for the info!
Leucovorin might help - it's folinic acid and it's used as "rescue drug" for MTX chemotherapy (in much higher doses). In rheumatology, it is used in a small dose, 12-24 hours after MTX and it really helps with side effects.

It is also (usually) used in smaller doses in conjunction with a biologic, vs. by itself.
06-15-2017, 08:50 PM   #15
More Than Pickles
 
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Such great information. Thank you all for sharing your stories and treatment approaches. I devour information about my health and always want to be prepared before doctor appointments to get the best treatment. I especially appreciate the information regarding additives/supplemental RX to methotrexate and other possible forms of arthritis related to Crohn's/ inflammation.
06-15-2017, 09:14 PM   #16
Maya142
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Here is some more info: http://www.crohnscolitisfoundation.o...plications.pdf
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