Avascular Necrosis

Anyone have experience with avascular necrosis in the shoulder (or any other joint)? I was just diagnosed with it in my left shoulder yesterday. I had been working with a physical therapist on what was thought to be tendonitis, but the joint was getting more and more painful so a MRI was scheduled. That is when the AVN was found. The orthopedist said prednisone was the cause. I never felt like I was on the drug for all that long-- a few month-long 40 mg tapers for occasional flares over a period of 4 years and then three days at 80mg in the hospital during my final flare which had to be tapered over a few months. I guess that was enough.

I am really bummed about this diagnosis as I am super active and like to backpack, rock climb, snowboard, run and do yoga. I am really hoping it doesn't pop up in other joints, but I know that is a distinct possibility. It is crazy, because one of the main reasons I was excited to get my ostomy was to minimize the chances of painful or impaired joints in the future. I knew prednisone wasn't good for bones and Remicade gave me excruciating joint pain. I love my ostomy and wish I would have gotten it the day I was diagnosed and had never put a drop of prednisone in my body. I know that isn't realistic, but now I have a lifelong issue to deal with due to a drug that hardly ever helped me at all. Oh well. Life goes on and I will deal with this new obstacle.

Anyone have experiences with AVN to share?

I don't have anything at the shoulders but my toes have some issues and indicating some kind of necrosis-like skin coloration. My GI asked me to see a Dermatologist so hopefully very soon.

My daughter (who was diagnosed with UC at about age 10 and was on prednisone several different times for the next 5 years) developed avascular necrosis in her hip early twenties. It took nearly a year to get the diagnosis. She had a "revascularization" procedure about 5 years ago (transplanted bone/veins from her fibula to her hip). The recovery was pretty brutal (on crutches - no weight bearing for many months) and while the deterioration seemed to slow down, she continued to have lots of pain and limited mobility. Earlier this year she had a hip replacement (implant), recovered quickly and is doing much better.
I don't know if you are considering any procedures, but in her case she wishes she had just had the replacement done to begin with.
Don't know what kinds of questions you might have, but feel free to ask.
I hope you feel better soon!