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Crohn's and joint pain

Hello, I am new to this website as from today and have a question to ask if any one could relate back to me please. I am 27 years old and got diagnosed with Crohn's almost 1 year ago. I could not tolerate azathioprine so I was immediately put on mercaptopurine 25mg. As weeks went on, I was still no better with bowl and pain problems. Almost everything I ate caused severe pain and nausea with fatigue lasting a few hours. I had my tablet dose put higher to 50mg mercaptopurine in December 2019. In February this year I experienced really itchy skin and hair loss with a lovely little bald patch. Bloods came back that my tablet was too toxic and now I have a high level of uric acid in my liver. My mercaptopurine has now gone to 12.5mg!! Along with allopurinol 100mg a day to try and pass the acid from my liver.

Four weeks ago I started experiencing pain shoulder, some days it was mild ache in certain positions. Some days it's so severe the dull ache is happening constant, even when sitting down not moving my left arm. I had my bloods taken 2 days ago so just waiting to ring up first thing monday. Has anyone had high uric acid in their liver due to their tablet being too toxic and at the same time, experienced shoulder pain like I have described? I am really anxious to know if the pain is due to liver problems at the moment or could it be a form of arthritis? Long a$$ paragraph I am sorry. It's so hard to get through to my IBD team lately 🙁

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  1. Hey there @Hayley, we're glad to have you as a part of our community! We know that IBD comes with many unknowns so you're not alone in experiencing these anxieties- especially when symptoms can potentially overlap with other things going on. How have you been feeling since lower your dosage from 25 mg to 12.5 mg? I do want to let you know that there are many people living with IBD who experience inflammation in their joints... around 30% actually! You can read more about it here: https://inflammatoryboweldisease.net/symptoms/inflammation-of-the-joints-skin-and-eyes/ You mentioned just getting your blood taken and waiting upon the results, have you also been able to bring up your shoulder pain with your doctor? We know especially during the pandemic going on, it's been harder to get through to doctors for many people. Please keep us updated and know that we are thinking of you. Best, Ashley (IBD Team Member)

    1. Thank you for your question, @hayley. First, I am sorry to hear of your ailments and what seems like side effects from the Crohn's.
      Ashley posted a great article as a resource for you, and I personally experienced joint pain with my Crohn's, so much so that I could not sleep with any covers on me to sleep because pushing them off of me caused great pain in my arms.

      I would definitely mention this to your GI, and if you have to, seek a second opinion. It is quite common among Crohn's patients (30%) to experience this as a symptom and would hate for you to suffer unnecessarily.

      --Julie (Team Member)

      1. Aw thank you for replying 😀. I have had my update so i thought i would keep an update incase some one is experiencing what i am right now.. i had my blood back. I got test for RH arthritis and it came back good!! Anxiety have been through the roof. Still pain and stiffness but easing some days. Arggghhh! Any way my IBD nurse then said we best have an xray. Wahoo! Oh but then i we discussed more over the phone and i told her that i had a lump/bump on my shoulder. Its not soft. Tbh i think my shoulder was that inflamed it has done something to me joint?? I don't know 😮. So no xray now guys. I am at the hospital today for a physical exam and my luck it has eased the pain and movement but that bump is still there so i should know more today hopefully. I have a high pain thresh and the only reason why i have been so concerned over this shoulder is its been lasting 4 weeks now. Coming and going. Something has to be wrong right? Hahaha

        1. Thank you for keeping us updated @Hayley! It is such an uncomfortable feeling to be in pain and have an issue like that, and not being able to figure out exactly what's causing it- we really hear you. We commend you for continuing to look for answers and advocating for yourself, that's so important. We will be thinking of you and really hope that you're able to find out what's going on. Gently, Ashley (IBD Team Member)

        2. Thank you .. no further forward today. My ibd nurse done a physical exam and she confirmed that lump was there and not in my head! So i went to Xray department to have an other physical examn then finally got my Xray but that came back good too so its not bones. Been poked and forced to move my arm and now its aching. Waiting for call back to see if i need an CT scan... give me strength! Thank you so much for the reply everyone. I can just imagine how people feel living with this a life time and i am a beginner 🙁

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