Help?!

[justme15]

Today my doc told me I have osteoporosis in my spine.  Not osteodystrophy, not osteopenia, but full blown osteoporosis.  and I'm only 36!  I guess those years of prednisone with my transplant have taken its toll on my spine.   Does anyone else have osteoporosis?  How are you managing it?  I wonder how this will affect my next transplant.  Will they continue to pump me full of prednisone even though my back is already impaired?

[Big E]

I'm certainly not an expert, but I've heard that you can increase your bone density by exercising with weights. They don't have to be heavy weights, just enough to challenge your muscles a little bit. I guess the theory is that when your muscles are active they pull against the bones and this makes the bones denser.

Does anyone know any more about this?

[jeannea]

Exercise with or without weights can build bone density. Even walking can help. But there's not much else to do. I have osteoporosis. I've had it a while (I'm in my 40s). While on dialysis you can't have the meds like alendronate. I got my second transplant about a year ago. I take alendronate every day. They only gave me 40 mg prednisone/day after transplant rather than the 120 mg/day I had after my first transplant. After the taper I'm back down to 5 mg/day. Recently I had some rejection and they gave me solumedrol 1 gram/day for 2 days. Basically the theory is you're alive but you have osteoporosis big deal. Personally I've decided on denial.

[justme15]

I guess I'm just paranoid.  every little back pain i feel, I think it's one of my vertebrae cracking.  I'm afraid if I move the wrong way I'm going to fracture an already weakened vertebrae.  some transplant centers have a steroid free drug protocol.  i'll have to see if I can be a part of that.

[Rerun]

I refuse to go get bone density tests.  That works!

[Deanne]

I'm pre-dialysis, on the transplant list and was diagnosed with osteoporosis several years ago. I'm 49 years old. I've been on fosamax for several years and my neph reduced me a 35 mg/week about a year ago since it isn't approved for late stage kidney disease. She said she has dialsysis patients on fosamax without a problem and that her goal was to build my bone density as much as she could before transplant because "everyone with a transplant ends up with bone disease." (her words.) I think it's just another condition to monitor and treat as best as we can.

[Riki]

*LOL*  not everyone with a transplant ends up with bone disease.. I've had 2 transplants, and there's nothing wrong with my bones.  I'm surprised at how many people on this site have said that they are on prednisone long term.  I've never been on longer than three months, even after rejection episodes

[kit78]

I was told by the transplant doc they no longer use steroids after giving someone a transplant.  I had a transplant and do not have any bone problems.  Since starting dialysis I do have pain in my hands when I wake up and also hurts in right hand  while on dialysis.  Of coarse no docs can ever give me any answers as to why. 
Like they say...it is a "Practice" because they are practicing! 

[Sax-O-Trix]

I just had the prednisone conversation with my transplant neph a couple of weeks ago (again).  He insists that since I am on cyclosporine and cellcept, I need to have that 5 mg of prednisone a day.  He said if I were on Prograf (nearly killed me with TPP/HUS within 24 hrs of the transplant), then perhaps we'd try to get away from the preds.  I have also had a couple of acute rejection episodes, so he insists I stay on prednisone.

[jeannea]

I had my first transplant in 1998 and have been on prednisone since then. I don't even know if my adrenal glands work anymore so I probably can't ever stop prednisone.

[Riki]

I had my first transplant in 1992, and was on prednisone while I was in the hospital, but I did not go home on it.  I was in the hospital for  about a month.  I was just on cyclosporin at first, because that was all they had at the time, I was on imuran for a while after my first acute rejection.  I think I went home on prednisone that time, but I had a timetable for tapering off as well.  They'd give me a calender with how much to take each day until I was down to 2.5mg every second day, and after I did that for a week I could stop all together