long term med effects

[Yankcg70]

I have had my deceased donor transplant for 31 years in July. The meds have changed over the years and thankfully i have been able to completely stop them but not before some damage has been done. My question is, is there anyone here who has or is experiencing secondary osteoporosis of the joints from the long term steroid use? My spine is fine but it has been found in shoulders. Knee and hip. Any input would be greatly appreciated.

[Bubba1995]

This post is from a few years ago, but I am very interested in you not having to take any anti-rejection drugs any longer. Did I read that correctly? If so, how did they decide to have you stop taking them? Just curious as I'm in my 27th year post transplant and have always been told, or read, that I would be taking anti-rejection drugs forever. I currently am on cyclosporine and mycophenolic acid.

Thanks, and it's great to hear of your success and longevity of your transplanted kidney.

Bob

[Yankcg70 in reply to Bubba1995]

Yes that is correct. Its been about 8 years since i have been on them...maybe a tad bit longer. The last few i was on were mycofenilate and immuran. First you will need to find a DR who is willing to consider it. 2nd, you will need to do it one at a time. You will also need to be very aware of your body to know when you might be having a rejection episode. After talking with my dr, we decided to try it since i had very good blood labs and no rejection episodes ever. I had a serious concern over the long term effects of the drugs. I also think he was with me on this cause i think he knew i would try it on my own...which as i am older i feel like it is not a smart move for sure. Best of luck