Humira Joint pain? Worst case scenario if I stop it?

Over the last 3 weeks I've developed screaming knee and ankle pain (knees worse) and left hand/arm tingling and numbness. It comes and goes but now is more frequent. I'm debilitated and can't sleep.

I'm on 80mg weekly.

What is the Worst case scenario for my fistulas if I completely stop it for a couple of weeks to see if the pain subsides? OR is it worth cutting the dose to 40mg weekly?

I have 2 setons placed. Bowels are good 0-3 times day. Some urgency but this is as close to remission as I've been in years.

However. I'm bed ridden, unable to walk dog. Literally. I'm taking percocets for seton pain but it's not touching joints. Naproxen (aleeve) also hasn't worked.

What can I take for pain relief?

Maybe the reduction in the dose would be enough to get rid of the pain. I know in my case, even on a normal standard dose of remicade, I had debilitating joint pain that kept me up all night. It sounds like what you're dealing with. it was terrible, especially the knees. There was absolutely nothing that helped. I have allergic reactions to all narcotic drugs, so it wasn't an option. It was unbearable. I wish i could offer some suggestions. i used tiger balm and I found that moving around was slightly better than sitting still, so i'd walk around a lot, or use my elliptical, and hope for the pain to subside. i would also elevate my legs with pillows when sleeping, but it didn't help much. nothing helped... I am happy your symptoms are manageable at the moment and that the setons seem to be helping. That all sounds very positive. I wish you weren't dealing with joint pain.

I remember the joint pain, it was in my knuckles. I just could not handle the side effects of Humira and had to stop. I'm not having any side effects on Stelara that I can tell, but on Humira is was very fast and very appearant. Does antibiotics help with your fistula?

Thank you everyone and a special thanks to you Totes. If I could describe the last 7 months in one word it would be "agony."

I've sent my GI a ton of questions regarding this. Sadly, I don't think he's seeing Humira as the culprit. I'm actually tempted to reduce this weeks dose to 40mg (or 1 pen) myself but don't think I could do so without his ok. I think it's reasonable to try that though and perhaps if my bowel goes awry to reintroduce IVIG. I'm struggling with the setons and have extreme pain so he's trying to sort that out and I'm unable to get out to get BW. Hopefully, he can sort this out.

There isn't any evidence for Stelara and fistulas though.

Abx didn't work at all for fistulas and in fact was on them when diagnosed. Buggers.

If I have developed antibodies wouldn't my bowel be worse?

As bad a the knee pain is the most worrisome is the tingling/numbness in my left arm. I don't want anything permanent to happen.

I had joint pain on both Remicade and Humira, although not nearly as bad as you. I didn't know what was causing it at the time, but now that I'm on Entyvio I don't have any joint pain. I also have a fistula (again, not as bad as yours), and the surgeon I'm seeing has told me there's a chance it will heal on its own with Entyvio. I sure hope so.

Hi Canada- it started 3 weeks ago, just 1 day a week. Then 2 days a week. Now it's been 4 days in a row. My infusion is every Thurs at a quadruple dose so I don't have any down time in between. Last night was the worst---I was screaming and crying. Managed to get myself into an epsom salt bath (had to kneel to protect my lady bits) and then I rubbed some cream on my knees after. It took pain down a bit. Sleeping pill to knock me out. Just woke and I'm in pain again.

This sucks. I thought I had a chance after the setons to regain my life.

What do I do? I can't imagine having d again especially with setons. But I can't do this anymore. I'm seriously tempted to not give myself an injection at all this Thurs to see if it calms down. My left arm is bothersome too.

My GI hasn't messaged me back. I'll email him again.

I haven't emailed italian doc or considered the study. I'm just going from one crisis to another and can't catch my breath in between.

DRR-- Entyvio was like water for me. Did nothing and I stayed on it for 7 months. I keep wondering if I would have been in this situation had we chosen Stelara or humira instead; but alas I guess it's not helpful to look back. Where is your fistula? I hope it heals for you. I restart hyperbaric oxygen next month and hope mine will heal with that.

Post Edited (U B Tough) : 3/21/2017 5:50:30 AM (GMT-6)

For those of you that have built up antibodies how does the joint pain start. Is it sudden and terrible everywhere. Or does it start out small and mild?