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After surgery did your arthritis improve?.

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Ulcerative Colitis
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Posted 5/16/2021 6:00 AM (GMT -6)
I underwent a modified APR/LAR in April. My CRS removed my Hartmanns pouch, most of my rectum and literally scraped the anus. (Adhesions had almost closed off my abdomen area-it was the most he could do.)

I am on Remicade every 6 weeks, methotrexate weekly plus supplements. Last infusion was February 23. Prior to surgery I could barely walk. My knees hurt constantly-regardless of their positions (straight or not) and if there was weight on them. My thumbs also have arthritis. I have not been able to hold a glass or pick things up for years.

I woke up from surgery with little to no pain in my thumbs or knees. Its stayed consistent since surgery.

I am.scheduled for my first post operative Remicade Infusion next week.

Anyone else have this happen? Could the knee and thumb "arthritis" be caused by the Remicade?

Clo
Posted 5/16/2021 6:26 AM (GMT -6)
Sometimes extra-intestinal manifestations improve after surgery, and other times they don't. No guarantees. Not sure of incidence odds of them going away versus persisting.
Posted 5/16/2021 5:26 PM (GMT -6)
I got arthritis after the colectomy. I never knew I had arthritis
Posted 5/16/2021 7:28 PM (GMT -6)
I didn't have arthritis with my uc, or after surgery, but I did get crippling joint pain while on remicade. Interesting...
Posted 5/16/2021 10:26 PM (GMT -6)
Thank you all for your responses. I appreciate you.

I will let you know if the crippling arthritis pain returns after my infusion.

I spoke to another friend who had been on Remicade. She said she too had crippling pain that resolved after she stopped taking Remicade. Yikes!!! Makes me want to stop Remicade--but with the extraintestinal symptoms and PG....that's not going to happen.

Will let you know. Thanks again everyone!
Clo
Posted 5/17/2021 11:20 AM (GMT -6)
Joint pain on remicade is typically associated with situations where your immune system has developed antibodies against remicade. As your immune system is attacking the remicade as it flows in your circulatory system. In that eventuality, side effects like joint aches, skin rashes, fever like temperatures, eye inflammation, and etc are more common.

There's a blood test for remicade antibodies that your gasteroenterologist can order.
Posted 5/17/2021 5:20 PM (GMT -6)
I never checked for antibodies but I had the joint pain almost immediately after starting remicade. I wonder if you can develop antibodies that quickly? I thought it was some type of drug induced lupus from the medication. It didn't work for me either, not a single but of improvement in my uc.

I didn't have the pain with entyvio but it also didn't help me.
Posted 5/19/2021 8:44 PM (GMT -6)
I knew it was too good to last! 😭 Beware...this is a vent.

Received results from Prometheous....low levels of Remicade in system with 0 antibodies. I am on weekly methotrexate so that I don't develop antibodies. Low Remicade level was expected because it had been 12 weeks since last infusion.

Infusion went fine. Stuffy nose from allergies cleared up. Seasonal asthma attack/coughing has slowed down overnight. I got up this morning to trot to the bathroom ...and my knees hurt so bad we had to drag my walker back out. I am so disappointed! My darn thumbs have started aching and I dropped my cup tonight.

My abdomen incision opened up (where I previously had PG) right after surgery....it drains alot. They are letting it heal from the inside out.... They removed my rectum and scrapped the anus....and that has a bunch of drainage if I sit up longer than 1 to 2 consecutive hours. After the infusion I had a 2 hour ride home. Drainage from abdomen and anus was and is such a small amount. Its sorta freaking me out.

Just got partial labs back from just before infusion and CRP was at 80. So my inflammation was high prior to infusion with little joint pain....and now I am confused....and so frustrated. My knees hurt even when I am in bed and they are straight.

I hate having both ulcerative colitis and Crohns.

Ok...its safe to come out now... I am done venting. Lol...
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