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Humira- Joint Pain

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Ulcerative Colitis
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Posted 10/21/2019 2:08 AM (GMT 0)
My UC is currently in remission, which was confirmed via a colonoscopy in early August. I take humira every two weeks, and blood work done in August showed normal levels and no antibodies. In terms of GI symptoms, I feel really good, but I am now dealing with very bad joint pain. It’s all over my body, my knees, me fingers, my wrists, my ankles, my shoulders. I’ve dealt with joint pain before, but it usually doesn’t last long and it usually comes with a UC flare, which I’m not having right now.

I’ve been trying to ignore it and hope it goes away, but it’s actually becoming debilitating. It hurts to get out of bed in the morning and it hurts to get off the couch if I’ve been sitting for even a few minutes. I’m 34 years old and I feel like I’m 80. I have a 6 month old and a 3 year old and being a mom is really hard when my body hurts this bad.

Has anyone experienced this before? Is it possible it’s the Humira even though I didn’t have any antibodies? I’d hate to have to stop the humira, since I’m currently in remission, but I also can’t keep living like this. Should I make an appointment with my GI?

I’m feeling pretty depressed about the whole thing. I finally get my UC under control and in remission and now I’m hobbling around. I can’t help but feel completely betrayed by my body.
Posted 10/21/2019 2:08 PM (GMT 0)
There's no easy answer to this. Three possibilities with none more likely than the others.

1.) Most often, if your joint pains that are caused by Humira they are due to antibodies, and you said you are clear of those! Not to say it is impossible for humira to cause it, it still might, but certainly the odds are a lot lower in that scenario. I've heard of some saying that they're 20 yet feel like they're grandmas or grandpas some nearly needing walkers due to the severity of the pain. It's a difficult to stop a medication when doing well. If it were drug induced, it would take 6-8 months or more for humira to fully clear from your blood, and you would slowly improve over that time frame.

2.) It could be a an extra-intestinal-manifestation of having an UC and about 25-30% of us encounter this. Stopping humira would not help in this scenario.
https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/arthritiscomplications.pdf

3.) It could be a second auto-immune condition like a Lupus or a Rheumatoid Arthritis. You can get tests to look for a positive ANA for either of those illnesses, or rule them out. Stopping humira would not help in this scenario.
Posted 10/24/2019 9:23 AM (GMT 0)
iPoop is spot on. I would just add that it is probably most appropriate at this point to ask for a rheumatology referral as there likely isn't much the GI can do (beyond testing to antibodies which is already done). A rheumatology workup will check for RA, enteropathic arthritis, lupus, and other causes of joint pain.
Posted 10/29/2019 9:19 PM (GMT 0)
Can people have extraintestinal symptoms of UC even if they aren't flaring or does it usually show up while flaring? How is joint pain treated for us? Is it treated? I'm experiencing (what I think is) joint pain and have never had it before. My hips hurt even when I am just lying in bed or sitting down for a while. The hip pain I just noticed 2 days ago while lying in bed and I thought i must have hurt my hip somehow so I switched to my other side and soon that side hurt, too. I haven't been exercising very regularly like I used to, usually only doing a long hike on the weekends and not much during the week. I've been somewhat stiff and a bit achey lately but I attributed that to not exercising, but this hip pain feels different. I don't understand how drugs that are used to treat rheumatoid arthritis can cause joint pain.
Posted 10/29/2019 11:56 PM (GMT 0)
Often, but not always, extra intestinal manifestations of UC are worst when we're flaring and best when in a remission. Sometimes extra intestinal stuff is independent of inflammation. Joint inflammation is usually in the big joints of the hip (at base of spine, or where legs join hip) or other big joints on limbs. EIMs really have no clear diagnosis path.

Sometimes we get a secondary auto immune condition like lupus or rhuemtoid arthritis. If they persist into a remission then seeing a rhuemtoid arthritis doc would be helpful, they can test for a positive ANA on those illnesses.

Sometimes it could be from remicade antibodies and your test will check for those.

Maybe you're just lucky and pulled something or got a bone bruise, and it'll go away on it's own.
Posted 10/30/2019 1:49 AM (GMT 0)
Thanks! Yeah, I hope so!
Posted 10/31/2019 2:47 AM (GMT 0)
I had this on Humira.

Swimming laps worked for me. It hurt like hell at first, but eventually it got to the point where my joints only hurt if I skipped a morning of swimming.

Also took a single Tylenol every morning.

Entivyo also did the joint pain thing for me, but exercise didn't help with it. IDK why.
Posted 10/31/2019 2:37 PM (GMT 0)
Thanks for the info.
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