RE: [TMIC] Osteonecrosis

[Deb Casey]

Hi, Sandy. Sorry to hear about the trouble Terry is having. So far my bone density test results have been ok, but I'm down to 7.5 mg every other day. I have broken quite a few bones though, but they've told me that is common. I've been trying to wean off of the pred. for quite a while. It seemed like I had all the side effects: holding fluid, weight gain - like 50 lbs. which thankfully has left but not quite as fast as it came! or as easy! hot flashes, like heat surges, high blood pressure, diabetes and a rapid heart beat. All are pretty much history with the decrease, although I still take the metformin (glucophage) to help . Have Terrry ask his dr. about doing the every other day thing. My neuro and physiatrist said the research shows levels stay stable so he may be able to cut his dose in half. I hope things start to look better for you guys soon. I'll keep you guys in my prayers, Deb C in Mi. --- On Wed 02/01, [EMAIL PROTECTED] < [EMAIL PROTECTED] > wrote: From: [EMAIL PROTECTED] [mailto: [EMAIL PROTECTED] To: tmic-list@eskimo.com Date: Wed, 1 Feb 2006 12:47:47 EST Subject: [TMIC] Osteonecrosis Thought it was time for another update on Terry as he has had a bit of problems in the past year. Those of you may remember that he had surgery on both shoulders and it seems his bones are continuing to deteriorate thanks to the long term continued use of steroids. When TM hit him in March of 2000, his internist said the first thing they needed to address is the long term affects of steroids and how to get him off them. He was at 150 mg daily decreased to 7 mg daily for the past 1 1/2 years + or -. He "crashes" if he goes any lower. The pay off has come and unfortunately it may be at a big expense. He now has fairly severe OsteoNecrosis, (his bones are "dying" as no blood supply is getting to them), in both shoulders, right ankle and left femur. He goes for yet another MRI and CT on Wednesday. After his Orthopedic reviews the reports, he is contacting a Professor at the Mayo Clinic for his advice. In my research, 90% of people with ON have it in their hips, (not Terry), and less than 3% have it 2 or more places. TM, now ON, both rare. You can't stop living your life but how much more can ones body take? You just try and try to be optimistic and hopeful, and then you're thrown back down into the corner. I know there are a few of you out there that have been on steroids for a long period of time and what are your side effects? Sorry it’s so long…(I could go on and on, too). I felt a need to share this with you as I don't feel my shoulders are as big as they use to be.... Sandy

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