Re: [TMIC] Osteonecrosis

[cherpent]

 

Hi Sandy,

I am so very sorry to hear about Terry. And boy I can certainly understand why your shoulders are not as big as they used to be. How much can one carry.

Please tell Terry that he is in our thoughts and prayers.  I certainly hope the doctors have some good answers/solutions for this. It is so hard to see a loved one go through everything he has been through. And you're right, you just get to thinking you are taking many steps forward, and then boom - back you go.  So true of many of us TMers.

Please stay in contact and let us know how he is doing.

Hugs

Linda in Bothell, WA

PS I did take steroids for 10 years - between the ages of about 37 to 47. But I went up each time I had a flare up of Sjogrens, then slowly weaned down to a maintenance dose. When I was on the high doses, I was practically euphoric the first week. Then all the joint pain came back after weaning down the 2nd week. I finally had had enough and just told my doctor to get me off of it.

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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