I posted over in the arthritis forum, but thought I'd post here as well since I'm not sure where to look for answers. My daughter was recently diagnosted with avascular necrosis (aka osteonecrosis ... meaning bone death) of both knees and her right elbow. I am looking for anyone else on these boards that have this and what treatment course they followed or any other information you might have for new treatments. We've seen three orthopedic surgeons (one at the MAYO...grrr who was not helpfut AT ALL) and just found a specialist in Baltimore that I pray will give us some hope.
She developed this from using Prednisone to try to get a severe attack of ulcerative colitis under control (did not work, ended up with a colectomy and a jpouch)...but now are told that her joints will eventually collapse and need replacement surgery. What the docs don't tell you about the dreaded Pred We knew about the possibility of osteoporosis, but not that her bones could die! Anyway, thanks for listening to me rant and I hope I hear from anyone that can give insight to treatment options.
20 yo daughter w/ Pancolitis
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
Daughter diagnosed with bilateral knee AVN
and right elbow AVN