Sciatic like pain

Hello,
It’s been a while since I posted. I’m in training on my job and sitting for very long periods. Anyway, I ended up with pain so bad in my buttocks area that ran down to my leg on one side. I had leg weakness and could not walk and I couldn’t do anything without excruciating pain. I ended up going to the ER and they gave me a pain pill and prescribed Prednisone at 50 mg for 7 days. I was reluctant to take it but the pain was so nagging until I took 20 msg and within an hour or so the pain was disappearing. I’ve been diagnosed with IBD (biopsy showed crohns in colon…although Dr said it looked like UC).

The GI doctor wanted me to have a Prometheus blood test. I assume to see if the Stelara I’ve been taking is working. My insurance does not cover them. In the past when I had bloodwork I was just Blessed that the insurance paid a percentage and they forgave the balance. I’m wondering if I can go elsewhere for this bloodwork. The Prometheus test taken in 2019 did not show that I had markers for IBD, so it’s confusing. Has anyone had that test to show negative and still go on to get diagnosed with IBD?

Also, would you expect a steroid to take away the pain so quickly if it’s related to IBD or maybe even arthritis? I’m so baffled by all of the extra symptoms I have had….eye issues, joint pain, SI joint & hip degeneration, per xrays. I’m not getting any relief from the Stelara when it comes to my joint pain at all and that tailbone like pain is the worse because it affects my mobility, along with pain in the shin area of my legs, which I haven’t even mentioned to my doctor yet. The GI doctor has been reluctant to change to another biologic despite the Rheumatoid doctor’s recommendation. Just wanting to know other people’s experiences. Thanks in advance for sharing.

Post Edited (RS2022) : 9/6/2023 2:30:51 PM (GMT-8)

Is the Prometheus test to check for antibodies or IBD? I did not take a Prometheus test to diagnose my disease so I can not help you with that. I take Remicade and used to take the Prometheus test to check for antibodies but LabCorp had the same test and it was a little less. With Remicade one of the listed side effects is joint pain..unsure with Stelara. We decided to just work around my joint pain because Remicade is working for me. This is something you should be discussing with your team of doctors. I would think that Stelara would be working for you by now. I would recommend keeping notes on when you have the pain, how bad it is and when you took your medication to try to see if there's a pattern. When was your last scope?

You might also want to reach out to Prometheus to get information on if the offer free or discounted testing any longer, and then other labs to get quotes before the test is submitted.

On the buttock pain. If you have a pinched nerve or osteoarthritis in your back area with inflammation--steroids will reduce the inflammation which does reduce the pain.

I have osteoarthritis in my back and knees... Hips, elbows and shoulders. When I have pain and I take 20 to 50 mg. of Prednisone the pain is much better a couple of hours later. If I should not take the next dose the pain returns. Usually my rheumatologist prescribes Prednisone, muscle relaxers, tramadol pain reliever and physical therapy along with alternating ice and/or heat therapy at home. It takes me about 3 weeks to work thru a painful episode with my back.

Extra intestinal symptoms can still occur even if you are on medication and even if that medication is working on your intestines. I have periods of time where my GI tract is fine but my skin, eyes or joints are having symptoms. The doctors prescribe medication to help with those symptoms... There are eye drops, skin lotions, pain pills and cream for the joints. You might need to have additional doctors for those items--I do and they work with my GI to help keep the extra intestinal symptoms as quiet as possible. A friend has her meds coming thru a pain management doctor and another gets everything okayed thru her GI.

I hope you feel better soon.

Clo

Have you tried to keep a food journal? For some people with IBD it helps. They can see that if they ate this the next day they felt worse.. or they had terrible gas 4 hours later. It's sorta a hassle but it did help me. Just a thought.

When my UC/Crohn's is acting up my joint pain is much worse.

Have you seen the dietitian yet? There's also a. Diet to help with inflammation.

Clo