Bone Health After Transplant

Posted by jolinda @jolinda, Sep 27, 2020

I'm interested in learning more about bone health post transplant. I have not seen a specialist but I would like to hear from people who have. I know chronic kidney disease can create conditions that harm bone density and I want to safely protect my bones while ensuring I don't harm my new kidney.

Interested in more discussions like this? Go to the Transplants Support Group.

@tjgisewhite

I had a liver transplant in December of 2019. I still take the Prograf and Cellcept, but have been off the Prednisone now for months. Why are you still on it?

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Maybe because shortly after my transplant I started showing signs of rejection and had to have steroid infusions. I asked at my last checkup if I would always be taking prednisone and she said yes.

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@jolinda

@cmael

Thanks for the response. I have never been referred to an endocrinologist but I appreciate the info on Fosamax I will research it a bit more. Has the medication worked? Any side-effects?
Thanks - J

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I’ve been taking it since May 2020. I won’t know until my next checkup about how well it’s working. I do know however, that my broken foot seems to be making new bone nicely. As far as side effects, I do notice that on the days that I take it (once a week) I seem to have more heartburn. I was told to take it first thing in the morning, don’t lay down after, and wait at least one half hour before eating or taking meds. I also take pantoprazole and need to wait after taking that before I eat. I’m glad it’s only once a week.

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Hi all,
I am a kidney transplant patient. About twenty years ago I took Fosamax for my osteoporosis, I took it for about five years and it worked pretty well. A few years later I took one shot of Prolia (I stopped because I had a low calcium event and got scared). I found out later that you shouldn't stop Prolia once you start. Well, that was all years before my transplant. Now, I have osteoporosis again post transplant and I am thinking of taking Fosamax again. What experience have you had with your osteoporosis treatment? Which treatment do you think is best for transplant patients? Thanks everyone!!

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@hello1234

Hi all,
I am a kidney transplant patient. About twenty years ago I took Fosamax for my osteoporosis, I took it for about five years and it worked pretty well. A few years later I took one shot of Prolia (I stopped because I had a low calcium event and got scared). I found out later that you shouldn't stop Prolia once you start. Well, that was all years before my transplant. Now, I have osteoporosis again post transplant and I am thinking of taking Fosamax again. What experience have you had with your osteoporosis treatment? Which treatment do you think is best for transplant patients? Thanks everyone!!

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Hello "hello1234", good questions about osteoporosis and transplant. You'll notice that I moved your post to this existing discussion called "Bone Health After Transplant" where you can see the conversation @jolinda, @cmael @rwalkie and @tjgisewhite are having. I also think @contentandwell @maryflorida and @athenalee might be interested in adding their thoughts and experiences.

I think @cmael has experience with Fosamax.

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@hello1234

Hi all,
I am a kidney transplant patient. About twenty years ago I took Fosamax for my osteoporosis, I took it for about five years and it worked pretty well. A few years later I took one shot of Prolia (I stopped because I had a low calcium event and got scared). I found out later that you shouldn't stop Prolia once you start. Well, that was all years before my transplant. Now, I have osteoporosis again post transplant and I am thinking of taking Fosamax again. What experience have you had with your osteoporosis treatment? Which treatment do you think is best for transplant patients? Thanks everyone!!

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I have a very high level of osteoporosis in my back and moderate pretty much everywhere else due to liver disease and Tacrolimus. The meds for osteoporosis are all hard on ones body, but my endocrinologist convinced me that the risk of having a broken back was a likely scenario if I didn’t take meds. She wanted to do an infusion of Reclast, but that interacts with Tacrolimus. So, I went on Alendronate in April.

I take it at 6 am every Tuesday, with at least 8 oz. of water and then do my morning walk and drink another glass of water. Then, my morning 1/2 cup coffee. I take my transplant meds at 8:15. Works for me so far.

I’m assuming you’re working with an endocrinologist. You should definitely speak with your transplant team as well about the meds. I also spoke with my pharmacist, and we determined my timing was good. You’re supposed to drink a full glass of water with it and don’t lie down, take any other meds, food, or drink other than water for at least 30 minutes. And, you always take it first thing in the morning.

You’ve probably done the 24 urine tests…I had not. There are certainly worse tests, but urinating into a hat for 24 hours when you drink 60 or more ounces of water everyday was not a picnic either!

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@athenalee

I have a very high level of osteoporosis in my back and moderate pretty much everywhere else due to liver disease and Tacrolimus. The meds for osteoporosis are all hard on ones body, but my endocrinologist convinced me that the risk of having a broken back was a likely scenario if I didn’t take meds. She wanted to do an infusion of Reclast, but that interacts with Tacrolimus. So, I went on Alendronate in April.

I take it at 6 am every Tuesday, with at least 8 oz. of water and then do my morning walk and drink another glass of water. Then, my morning 1/2 cup coffee. I take my transplant meds at 8:15. Works for me so far.

I’m assuming you’re working with an endocrinologist. You should definitely speak with your transplant team as well about the meds. I also spoke with my pharmacist, and we determined my timing was good. You’re supposed to drink a full glass of water with it and don’t lie down, take any other meds, food, or drink other than water for at least 30 minutes. And, you always take it first thing in the morning.

You’ve probably done the 24 urine tests…I had not. There are certainly worse tests, but urinating into a hat for 24 hours when you drink 60 or more ounces of water everyday was not a picnic either!

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@athenalee thank you so much for the details on exactly how you take the medication! Your detailed explanations are incredibly helpful to me! I am hopeful to take my Fosamax once a week at 6am (with a full glass of water), then take my Cellcept and Tacronlimis at 7:15am. Do you think that schedule will work? (I eat a little food with my immune suppression drugs to avoid tummy upset so I think that schedule may work). Is this the first time you have ever taken medication for osteoporosis?

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@hello1234

@athenalee thank you so much for the details on exactly how you take the medication! Your detailed explanations are incredibly helpful to me! I am hopeful to take my Fosamax once a week at 6am (with a full glass of water), then take my Cellcept and Tacronlimis at 7:15am. Do you think that schedule will work? (I eat a little food with my immune suppression drugs to avoid tummy upset so I think that schedule may work). Is this the first time you have ever taken medication for osteoporosis?

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That should be good. It just says wait 30 minutes. Good luck! It’s a little trepidation since you don’t find out for awhile if it’s helping. At least with our immunosuppressive meds you get to monitor how your new organ functions.

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@athenalee

That should be good. It just says wait 30 minutes. Good luck! It’s a little trepidation since you don’t find out for awhile if it’s helping. At least with our immunosuppressive meds you get to monitor how your new organ functions.

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@athenalee why are you taking 24 hour urine tests? Does it have something to do with the Fosamax or is your doctor just monitoring your kidney transplant?

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@hello1234

@athenalee why are you taking 24 hour urine tests? Does it have something to do with the Fosamax or is your doctor just monitoring your kidney transplant?

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No. I had a liver transplant. The endocrinologist had me take one prior to starting the Alendronate and then after three months on it. It’s to monitor creatinine and calcium levels. Alendronate can impact kidneys and it can lower your calcium levels.

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@athenalee

No. I had a liver transplant. The endocrinologist had me take one prior to starting the Alendronate and then after three months on it. It’s to monitor creatinine and calcium levels. Alendronate can impact kidneys and it can lower your calcium levels.

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Good to know! Thanks again @athenalee 🙂 Then, I assume some additional 24 hour urine tests are in my future too if my doc recommends Fosamax! I am not sure what the osteoporosis treatment of choice is going to be for kidney transplant patients.

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