u/Prize-Astronaut-8909

Hey everyone,

I’m F,26 and have had ulcerative colitis since I was a kid. For a big part of my teens I was on really heavy steroids – repeated 1000 mg IV prednisolone pulses and long stretches of 60–100 mg orally with slow tapers. I ended up steroid‑dependent with adrenal issues before I finally got switched to biologics. Stelara has thankfully put me into a 6 year remission now!

In 2022 I had an MRI of my hips because of right‑sided hip pain. The radiology report described “popcorn‑like” signal changes in both proximal femurs (right worse than left), interpreted as older bone infarcts/osteonecrosis related to long‑term steroid use, plus some trochanteric bursitis/tendinosis.

When I brought this up with the doctor, I was told the AVN/bone infarcts were basically an incidental finding and not something I needed to worry about. No follow‑up imaging, no bone density scan, no real conversation about steroid‑related bone damage – mostly “do physio, it’s probably more functional.”

My gastroenterologist tested me for HLA B-27 to check if there was maybe some genetic disposition for arthritis, but said that could most probably be ruled out after the test came back negative.

Since 2022 and the diagnosis of the bone infarcts, my hip and leg pain have definitely gotten worse, even though I do regular strength training and physio whenever I’m not wiped out by infections from immunosuppression. Standing, walking and lying on my right side are all more painful now, and it’s hard not to feel like that AVN on MRI was more than a random side note.

Right now I’m trying to push for updated scans and a proper evaluation that looks at UC, the steroid history and the bone findings together instead of treating them separately.

I’m curious if anyone else here with UC and a big steroid history has heard of or gone through something similar. Any experiences or tips would be really appreciated.

(I am living in Germany and the process to find a capable doctor that treats you quickly and not only after waiting for months-years for an appointment due to general health insurance and not private insurance is quite difficult.)

I’m F,26 and have had ulcerative colitis since I was a kid. For years I was on really high‑dose steroids – including repeated 1000 mg IV prednisolone pulses and long courses of 60–100 mg orally with slow tapers. I ended up steroid‑dependent with adrenal issues, and only got onto biologics later.

In 2022 I had an MRI of my hips because of right‑sided hip pain. The report described “popcorn‑like” signal changes in both proximal femurs (right worse than left), interpreted as older bone infarcts/osteonecrosis in the context of long‑term steroids, plus some bursitis/tendinosis.

When I talked to the doctor, they basically said the AVN/bone infarcts were an incidental finding and not really relevant – nothing to worry about. No plan for follow‑up imaging, no DXA, no real discussion about steroid‑related bone damage. The main message was: do some physio, it’s probably more functional.

Since then my hip and leg pain have clearly gotten worse despite regular strength training and physio whenever I’m not sick from immunosuppression. Walking, standing and lying on my right side are all more painful now, and looking back, the AVN on MRI doesn’t feel “incidental” at all.

I’m currently trying to get updated scans and a proper work‑up from rheumatology/orthopedics that actually takes the AVN seriously.

Has anyone else with steroid‑induced AVN been told early MRI findings were “incidental” or “nothing to worry about”, only to have things progress later? How did you get doctors to listen, and what ended up helping you the most once AVN was finally treated as a real part of the problem?

(I used AI to structure the post, wanted to mention this for transparency reasons)