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For those with UC-related joint pain

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Ulcerative Colitis
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Posted 1/8/2018 5:02 PM (GMT -5)
For anyone who suffers from UC joint pains, can you describe them to me? Do biologics help? Is there anything I can do for them? How long do they last for you? Do I bother going to the doctor (I really don't want to because I had a busy year in 2017 with tons of doctor visits)?

I have recently been experiencing quite a bit of joint pain. I'm 37 and it seems that this has happened all at once. Both knees, one shoulder, both elbows, occasional hip pain. The pains are generally movement related, as in, they don't hurt when I'm sitting still, just from certain motions. I will get shooting pains that stop after I stop whatever movement caused them. I'm assuming this is the UC-related joint pains I hear about. I feel like I'm in a solid remission otherwise. Any guidance would be helpful.
Posted 1/8/2018 5:08 PM (GMT -5)
I get joint pains in my hips, wrists, knees, and hands. Mine is more of a constant nagging pain with occasional shooting pains. I was on humira for a few months but it actually made my joint pain worse, but everyone reacts to different medications differently so don’t be afraid to try it! If you go to the doctor about it they may just send you to a rheumatologist to rule out arthritis but that is probably all they will do for joint pain or what they’ve done for mine anyways.
Posted 1/8/2018 9:24 PM (GMT -5)
I’ve had them occasionally over the years. When mild, small bones in hands and feet. When more severe, had both elbows, one hip, both knees, hands and feet. It’s a constant ache that has me dreaming of ibuprofen! 😂 Mine have only presented with no other associated signs of UC flare. . It’s worth mentioning to GI and depending on severity determine next steps. There are some meds that can help with both.
Posted 1/8/2018 11:13 PM (GMT -5)
My joint pain has been constant since January 2017 but has worsened since then. I have seen so many doctors for it and they have tested for arthritis and lymes disease. Both negative. I've gotten x-rays on my elbows, wrists, and knees and they don't see any arthritis either. I've done 16 weeks of physical therapy for my knees with no improvement. I am at a loss because my joints and left elbow kill me. Walking is my most painful activity and I have to do it every day. I limp everywhere and look like I am walking with a stick up my butt. It is really making me depressed and since my tests don't show anything, none of my doctors seem to care.

My UC has been in remission for a few years now so my inflammation markers are also normal. It is so frustrating!!
Posted 1/9/2018 6:24 AM (GMT -5)
I have sacroiliac joint pain and occasional finger joint pain. My rheum suggested Humira, but am really not inclined to go on a biologic when my UC is in remission. He also acknowledges it comes with additional side effects and is possibly in his words "a really expensive pain killer". Diet has helped my joint pain (I went on SCD when the sacroiliac pain started) as have turmeric supplements.

I don't know how others have felt, but for me the joint pain was much more depressing and hard to handle than UC.
Posted 1/9/2018 8:59 AM (GMT -5)
UC involves inflammation of the large intestine that's most likely caused by our immune system. Joint pains are inflammation of the joints (also known as an arthritis but can occur at any age) and are most likely caused by our immune system. It's possible you have an extra-intestinal-manifestation of UC.

Here's a good read from the CCFA on it, give it a read if you haven't already:
www.crohnscolitisfoundation.org/assets/pdfs/arthritiscomplications.pdf

Sometimes we can take sulfasalazine instead of mesalamine as it will treat both joint pains and UC at once.

Sometimes we can take a COX-2 style NSAID which are safer than standard NSAIDs for us.

Sometimes we just take a NSAID sparingly, even though they have the risk of worsening our UC.

It really depends on how bad the joint pain is, and I'm guessing it is pretty bad for you to ask about it. I would see a doctor about it. Just take the above and suggestions other's here have with you, so you know some possibilities of what it could be. Get some diagnostic tests to see if you can narrow down what it actually is. And don't rule out RA and other auto-immune conditions, as sometimes we develop a 2nd or 3rd after time...

It truly sucks though, having joint pains and UC. Like UC isn't enough as it is!
Posted 1/9/2018 11:25 AM (GMT -5)
My immune system is deranged, if I somehow strain a muscle or joint I will get an attack. The attack
will increase until it is difficult to stand the pain. If I catch it real early sometimes naproxen will end the
attack. I have tried many many alternatives,which do not work. The only thing that works on me is
a short course 50mg pred, with quick 2 weeks or less taper. The immune system then forgets, and
it is like nothing has ever happened.
Old Mike
Posted 1/15/2018 4:40 PM (GMT -5)
Sorry I took so long to respond. Thank you all for taking the time to answer. I tend to think my joint pains are immune system related because of the way they come and go with no particular rhyme or reason. I do not mind taking the occasional nsaid, if needed. They have never given me trouble. The problem is I don't know when an "attack" will come. I will be walking up the stairs and all of a sudden my knee wants to give out or i'll carry something and my elbows will start screaming. An hour later, all is well. This cycle will repeat for a few days then disappear.

@Bacon girl, I'm sorry you are having a rough time. It has been my experience that asking more of our bodies is generally better than taking it easy. I still try to exercise as much as I can doing weight bearing exercises. I feel like it helps physically and mentally. I hope you figure out what is best for you.
Posted 1/15/2018 5:38 PM (GMT -5)
hey Chuck - just curious > how much exercise do you get ? and what meds are you on currently ?

my thought is pretty much along the lines of OM's word = DERANGED ! something, at some point kicked the crap out of our happy, easy peasy, routine bodily functions and the result was a DERANGED body that will forever affect us in numerous and unpredictable ways -

for me i just have to be more attentive and responsive to the pains my body is serving up -
Posted 1/15/2018 6:40 PM (GMT -5)
@TT - I'm taking Lialda and duloxetine (cymbalta). I exercise sporadically. I tend to get really into it for a while, where I workout around 4 times a week over the course of 4-6 months, then fall off the wagon, like most I guess. The joint pain seems to be worse the less I do.

I agree with the deranged comment by OM as well. My immune system is screwy too. I am still dealing with numbness, muscle spasms, strange tooth pains, my jaw will snap shut for no reason or start wiggling around side to side/teeth chattering etc. Why not sprinkle in some random joint pains?? Doctors have no answers for me so I don't plan on going to them anymore other than for annual physicals or major flares of UC. I've had my fill in the last year and really feel like "deranged immune system" is the best description of what I have going on.
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