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Joint issues are becoming unbearable, need advice.

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Posted 4/15/2024 9:25 PM (GMT 0)
Hey, everyone!
I've been on Humira for 3 years now, and added Sulfasalzine in January to help deal with my joint issues (my knees have been swelling up every few months, requiring visits to a Rheum to drain them).

My knee has flared up yet again and I've been experiencing lethargy, a ton of joint pain, and chills. My UC symptoms are actually non-existent, but it seems like my biggest issue now are these joint problems. sad

I'm going to be making an appointment with both my Rheum and my Gastro because I'm pretty sure that I need to be on a stronger medication.

I'm curious if anyone has had similar joint issues, and if they are on a med that has helped? Both my docs are open to suggestions regarding meds.
Posted 4/16/2024 2:48 AM (GMT 0)
Is the joint pain caused by humira? For the first 6mths to 1.5 years on stelara I had the most excruciating knee pain. I mean rolling on the floor kind of burning. Rheumy put me on benadryl with stelara and 7 days post injection. Worked like a charm. I can't take prednisone at all so I'm grateful this worked for me.

Hope this helps.
Posted 4/16/2024 3:17 PM (GMT 0)
I had pretty severe joint pain on humira. More like frozen joints where I couldn’t use my shoulder or elbow or hand. Scary for sure. They just wouldn’t bend. I had joint issues on all the TNFs. Rinvoq got rid of all my joint pain so I haven’t had any in a while. It was taken from the arthritis drugs to be used for UC. I thought I would be plagued forever with my joint pain, but it was just the TNFs causing it.
Posted 4/24/2024 9:41 PM (GMT 0)
My rheumatologist actually recommend Rinvoq so hopefully I can try that next!
Posted 4/25/2024 7:35 PM (GMT 0)
MB, I do not think Rinvoq can be combined with Humira. I think my GI said they prefer it to be the only immune suppressor in the system. I know it can’t be used with 6 mp or imuran. Would you be okay fully switching to Rinvoq? That is the hard decision to make if your UC is okay. That usually trumps any decision I make since life flaring is no life worth living (for me anyway). I know the arthritis dose is only 15 mg. The rheumatologist acted like I was crazy when I was on 45 mg at the time. He said he wasn’t aware the UC dosing was so high.
Posted 4/25/2024 7:55 PM (GMT 0)
When I first saw a rheumatologist last year, I'd been having joint issues for long predating Entyvio. I have synovitis in my right knee--at one point, when this first started like seven years ago, I also needed it drained. It was bonkers. In the past few years, it hasn't been as bad, but I have developed chronic mild inflammation in my SI joint and apparently in some of the soft tissue attachments in my hips.

The rheum advised that I stay on Entyvio, which doesn't help the joint issues, for as long as it works for me, if I can live with the joint symptoms. I have acquired a sports med doctor who can ultrasound the knee and drain / inject with steroid if inflammation gets really bad (I haven't done this yet). The rheum said if you have a biologic that works for the UC, stick with that.

I've wondered whether LDN would help with pain / inflammation in the joints (and perhaps my eyes), as an addition to my biologic. But I only have so much energy to explore these options--often I try to ignore what I can and just live life. But it sounds like your quality of life is significantly affected by the joint issues! I'm really hoping you find some good relief, and please keep us posted so we can learn from your experience.
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