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Ache like the flu

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Ulcerative Colitis
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Posted 6/26/2019 6:43 PM (GMT -5)
My forearms, wrists and hands really ache.
The front of my legs and the top of my feet ache badly.
It’s like the ache when you have the flu.

This has been going on for a long time, but it’s really bad right now. It’s hard to sleep. I just HURT!
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They found calcified fibroids, one the size of a grapefruit and precancerous cells. So I just had a complete hysterectomy 10 weeks ago. The said the fibroids may have been aggravating things...
Posted 6/26/2019 9:52 PM (GMT -5)
Are you flaring? A flare can cause aching.
If not, could it be from Entyvio? Is it better or worse related to when you had an infusion?

I hope you feel better soon.
Posted 6/27/2019 7:10 AM (GMT -5)
I'd get an entyvio antibodies test to see if you're developing those (those with antibodies are more likely to have side effects like joint aches). Also possible you're getting joint-inflammation as an extra-intestinal-manifestation of UC.
Posted 6/27/2019 5:37 PM (GMT -5)
It started before the Entivio, improved with the Humira, before I had a bad reaction to that.
Now it’s really bad.

Anybody else get this as “extra intestinal inflammation?”
I feel like that’s just what they call anything they can’t figure out.

We’ve never been able to get out of flare since this started, except when I’m on a lotta Prednisone.
Posted 6/28/2019 7:14 AM (GMT -5)
The skin (dry itchy skin, psoriasis, eczema, contact-dermatitis), joints, and eyes (uveitis) are the favorite targets of our immune system with extra-intestinal-manifestations (EIMs). Heard a number of people here over the years complain about them, as the incidence is about 20-25% of us who encounter EIMs.

A good read on the joint pains/inflammation (known as arthritis which can hit us at any age):
https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/emr/arthritiscomplications.pdf
Posted 7/1/2019 12:53 PM (GMT -5)
I have had joint paint since weaning off pred. Been on Entyvio almost a year, prior to that Remicade. Before this I never had any pains like this, now I can barely get upstairs. I am woke by the pain every night. I really wonder if it is caused by the biologics and am considering stopping Entyvio. I'd rather have gut symptoms that hurt every where all the time.
Posted 7/1/2019 6:47 PM (GMT -5)
I wouldn't stop it without antibody evidence. You could ask your doctor about an antibody test for entyvio:

https://www.labcorp.com/test-menu/38826/vedolizumab-and-anti-vedolizumab-antibody
Posted 7/2/2019 2:00 PM (GMT -5)
I'm having the antibody and levels tests done next trough. I wouldn't just stop out of the blue. But what if my levels are good and there are no antibodies? All my other tests have been improving, all levels are now normal and I am probably close to remission, but I still have this crazy pain, which is a known issue for biologics. So then, do I quit to see if it helps? There is still Xeljanz. I have a colonoscopy coming up and after it and the tests there will be a long hard talk with my GI.
Posted 7/7/2019 12:27 AM (GMT -5)
I’m having a weird period of body wide inflammation and pain right now too. All I could guess was some sort of flare due to excessive sun exposure as I have no UC symptoms. Could this be a summer thing? This always happens to me in summer.
Posted 7/7/2019 9:00 AM (GMT -5)
Some of our medications can make us photo sensitive, and IBD arthralgia does not go hand in hand with a flare, it can exist even in remission.
Posted 7/7/2019 12:55 PM (GMT -5)
My intestinal symptoms are pretty much gone at this point, but I still get the body aches and neuropathy, especially at night. My legs hurt, my arms and wrists and hands hurt. A few Tylenol usually help during the day when I get wider aches, but a hot shower is usually necessary at night (even sometimes at 3am). It sucks, but it is life, and it's better than pooping my pants.
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