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Swollen Fingers and Painful Joints

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Posted 4/6/2021 2:20 PM (GMT -6)
Hi everyone...
I wanted to see if anyone experienced these symptoms or if it was unrelated to my UC flare.

A little backstory... I recently made the switch from Remicade to Entyvio due to Remicade no longer working. Last Remicade infusion was March 10th , first Entyvio infusion was March 23rd. I have not noticed much change in my GI symptoms but doc told me to wait until 3rd Entyvio infusion before expecting any results.

However, I’m starting to get pretty extreme joint pain in my hands and feet. My pointer fingers are extremely swollen and stiff..it’s uncomfortable to make a fist. You can also feel hard sore nodules on some fingers. My cuticles are also red, swollen and inflamed.
Has anyone experienced something like this? Is it a normal UC side effects or could it be possibly withdrawals from the Remicade?
Posted 4/6/2021 3:20 PM (GMT -6)
I had horrible pain on Entyvio. Joints and muscles. I was moving like I was 85 years old. After being off it for about two months all the pain was completely gone!! I would marvel each time I went up and down stairs smile I am now on Stelara and guess what - pain is back although not as bad as on Entyvio. I have the same issues with my hands, can't really make a fist, they feel swollen and painful. I am seeing my rheumatologist in July, hoping he might be able to help. I take the maximum dosage of Tylenol Arthritis daily, just to be able to function. Still hurts but it takes the edge off. I have tried CBD etc but after awhile I was having issues with my heart so I quit. Was on Tramadol for awhile but it really didn't do much either. My GI suggested trying Humira with the Stelara. I'm not sure I want to burn up that option just yet, and the Stelara is getting me as close to remission as I have ever been since being diagnosed. Would love to know what you find out.
Posted 4/6/2021 5:06 PM (GMT -6)
Thank you! I wonder if it’s the drugs we are on or purely UC related.
My doctor wanted to start me on steroids but I get horrible joint pain with that as well, so I am prolonging that as long as possible.

I’ve had the joint pains and swollen hands prior to taking Entyvio. I once had to delay my Remicade infusion by a month due to insurance, and I developed the same issues. My feet swelled to where I couldn’t wear my shoes or hardly walk.

I try to avoid taking painkillers as they seem to aggravate my UC... it’s quite the double edge sword we have to deal with.
Posted 4/7/2021 8:17 AM (GMT -6)
Funny, I find prednisone relieves all my body pain. If only it didn't have such nasty side effects...

I sometimes wonder if I have kind of a rebound effect when painkillers wear off.

It's kind of crap that we not only have all the gut issues but then all this as well!! <sigh>
Posted 4/7/2021 8:40 AM (GMT -6)
Take boron or do a borax protocol. It will get rid of your joint pain. If immune suppression causes joint pain then it can mean fungus in the joints. The immune system uses boron to to make chitinase, which is the enzyme that breaks down fungus in the joints.

My father used to have horrible arthritis that he'd have to treat with prednisone, which only sort of helped. When he started taking boron every day his joints cleared. He's 72 now and walks 2 miles a day, rain or shine.
Posted 4/7/2021 10:00 AM (GMT -6)
Ugh, sorry to suggest this UC girl, but I just developed the same thing. 8 month flare, humira fail, stelara fail, now on Xeljanz (ummmmm possibly working!!!!) And WHILE I was on humira and stelara developed same symptoms. Thought were side effects, and of all people, my dermatologist said 99% it is psoriatic arthritis (she has it....and during full body exam found one small patch of psoriasis which I never ever had). Trying to get into a rhemy soon, but everyone is jammed.

The psoriasis has cleared on its own, or Xeljanz. But the aches and pains, still awful.. It's like I've done yard word for days and then someone beats me with a baseball bat. Especially those sausage fingers (google it). I was really hoping the Xeljanz would help, maybe it will further down the road, only on it one week. Good luck but my doc said it is soooo common for UC'rs - or other auto immuners - are very prone to other autoimmune diseases esp during a flare. Good luck you are not alone and you're still beautiful!
Posted 4/7/2021 11:41 AM (GMT -6)
Thank you for the reply! I also get random dry scaly patches of skin but also tossed that up as anther side effect...

I will definitely do some research and perhaps schedule an appt with a rheumatologist. I did a few google searches and only freaked myself out further and had many more what if’s after looking...

The swelling seems to come and go. Right now it’s tolerable, but 2 days ago I could barely close my hand or open a lid on a bottle.

It’s so hard to understand what’s a UC symptoms, medicine side effect, or some other unrelated issue.

Praying this Entyvio works! Getting my second dose as I type, and I’m very optimistic this time!
Posted 4/7/2021 1:48 PM (GMT -6)
Hoping entyvio works for you! It was my ticket to remission!
Posted 4/9/2021 10:09 AM (GMT -6)
I have been on Xeljanz for a couple of years now and works fantastic against UC for me , however I do suffer some joint pain in my knees but the strange thing is both of my knees are replacements so have never been able to understand why they ache there.
Posted 4/9/2021 12:05 PM (GMT -6)
Definitely see a rheumatologist for indepth blood testing and hopefully a switch to a med that will address that.

I suggest uric acid testing and rheumatoid factor soon tho.

q
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