1. < Osteoporosis & Bone Health

Osteoporosis treatment post transplant

Posted by lilypop @lilypop, Jun 10 9:24am

I am a post kidney Transplant patient who has developed Osteoporosis.
My doctors have recommended Prolia. I’m scared to start it with everything I have read. They say it is the safest for me(kidney wise). Anyone on here post Transplant with a fair/good kidney function with osteoporosis? Please share your treatment.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

windyshores | @windyshores | Jun 10 10:04am

I have chronic kidney disease and Tymlos, Forteo and Evenity were all okay for kidneys. I wonder if your doctor is thinking only of Bisphosphonates like Reclast or Fosamax (alendronate) vs Prolia.

The thing is, for any of those drugs, unless you are in your 80's and can stay on Prolia, we all end up doing Reclast to prevent rebound and/or lock in gains from the other drugs.

I am doing a 20% dose of Reclast this week with IV hydration, slow infusion and tylenol, to minimize effect on kidneys. I did two years Tymlos (dose is adjustable) and 4 months Evenity. My scores were pretty bad but I had excellent gains.

If your bones aren't too bad, you could do Prolia, and you can do it for several years, but the longer you stay on it the harder it is to get off. When you stop, bone density goes down and fracture risk goes up quickly unless you do Reclast. If you only do 1-3 shots (a year and a half) alendronate might be used to stop the rebound and is gentler on the kidneys than Reclast.

This is all from my own experience and I hope you can discuss with an endocrinologist who also consults with your nephrologist! It depends on age, DEXA scores, kidney status and other health issues so I hope your doctors can individualize.

REPLY
1 reply
lilypop | @lilypop | Jun 10 11:56am
In reply to @windyshores "I have chronic kidney disease and Tymlos, Forteo and Evenity were all okay for kidneys. I..." + (show)
@windyshores

I have chronic kidney disease and Tymlos, Forteo and Evenity were all okay for kidneys. I wonder if your doctor is thinking only of Bisphosphonates like Reclast or Fosamax (alendronate) vs Prolia.

The thing is, for any of those drugs, unless you are in your 80's and can stay on Prolia, we all end up doing Reclast to prevent rebound and/or lock in gains from the other drugs.

I am doing a 20% dose of Reclast this week with IV hydration, slow infusion and tylenol, to minimize effect on kidneys. I did two years Tymlos (dose is adjustable) and 4 months Evenity. My scores were pretty bad but I had excellent gains.

If your bones aren't too bad, you could do Prolia, and you can do it for several years, but the longer you stay on it the harder it is to get off. When you stop, bone density goes down and fracture risk goes up quickly unless you do Reclast. If you only do 1-3 shots (a year and a half) alendronate might be used to stop the rebound and is gentler on the kidneys than Reclast.

This is all from my own experience and I hope you can discuss with an endocrinologist who also consults with your nephrologist! It depends on age, DEXA scores, kidney status and other health issues so I hope your doctors can individualize.

Jump to this post

I was on Fosamax and could not tolerate it. Endocrinologist then said Reclast. I raised hesitation since it would be in my system for a year and my kidney function is just okay. So, then she and Transplant said Prolia. Were you ever on Prolia? I'm not sure why the other drugs weren't offered as an option. I asked the Endocrinologist what happens after Prolia, she remarked Reclast. I don't understand that as it would be rare for my kidney function to get better in time, and it's harder on the kidneys. It would be nice to hear from someone who has had good experiences with Prolia. Are they out there? Does this site offer doctor recommendations?

REPLY
1 reply
windyshores | @windyshores | Jun 10 12:52pm
In reply to @lilypop "I was on Fosamax and could not tolerate it. Endocrinologist then said Reclast. I raised hesitation..." + (show)
@lilypop

I was on Fosamax and could not tolerate it. Endocrinologist then said Reclast. I raised hesitation since it would be in my system for a year and my kidney function is just okay. So, then she and Transplant said Prolia. Were you ever on Prolia? I'm not sure why the other drugs weren't offered as an option. I asked the Endocrinologist what happens after Prolia, she remarked Reclast. I don't understand that as it would be rare for my kidney function to get better in time, and it's harder on the kidneys. It would be nice to hear from someone who has had good experiences with Prolia. Are they out there? Does this site offer doctor recommendations?

Jump to this post

Maybe your DEXA scan scores are mild and the doctors are thinking only of Prolia and Reclast. But in the situation of a kidney transplant it seems insurance would cover Tymlos, Forteo or Evenity. Some people have good experiences with Prolia..it's just that you lose everything you gained when you stop unless you do Reclast (or Fosamax if you only do a few Prolias).

I could not tolerate Fosamax. Tymlos has been the only one I could tolerate and it works really well. I am doing only 1mg of Reclast, which is 20% of the usual dose. You could even do 10% to spare your kidneys. IV hydration and slow infusion. No matter what you do it seems you will need Reclast Fosamax or possibly Actonel- all similar. We are are in a bind!

REPLY
Please sign in or register to post a reply.