Bone Health After Transplant

Posted by jolinda @jolinda, Sep 27 10:40am

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.

My transplant was 4/6/18. At my last checkup I saw an endocrinologist who put me on Fosamax after being diagnosed with osteopenia. I also have been taking 5 mg of Prednisone. About a month ago I broke a bone in my foot just walking up the deck stairs, but didn’t see the doctor about it until two weeks ago. It had been hurting, but it didn’t seem bad enough to have broken it.The radiologist report said that I had considerable thinning of the bones of my feet. Needless to say I’m concerned about It. I’ll be seeing the foot doctor tomorrow.

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@cmael

My transplant was 4/6/18. At my last checkup I saw an endocrinologist who put me on Fosamax after being diagnosed with osteopenia. I also have been taking 5 mg of Prednisone. About a month ago I broke a bone in my foot just walking up the deck stairs, but didn’t see the doctor about it until two weeks ago. It had been hurting, but it didn’t seem bad enough to have broken it.The radiologist report said that I had considerable thinning of the bones of my feet. Needless to say I’m concerned about It. I’ll be seeing the foot doctor tomorrow.

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@cmael how long have you been on 5mg of presidone?

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@tjgisewhite

@cmael how long have you been on 5mg of presidone?

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I’ve been on Prednisone since my transplant. I started at a higher dose and gradually tapered off to 5mg. once a day. I also take Prograf and Cellcept for immunosuppressants.

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@cmael

My transplant was 4/6/18. At my last checkup I saw an endocrinologist who put me on Fosamax after being diagnosed with osteopenia. I also have been taking 5 mg of Prednisone. About a month ago I broke a bone in my foot just walking up the deck stairs, but didn’t see the doctor about it until two weeks ago. It had been hurting, but it didn’t seem bad enough to have broken it.The radiologist report said that I had considerable thinning of the bones of my feet. Needless to say I’m concerned about It. I’ll be seeing the foot doctor tomorrow.

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@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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@cmael

I’ve been on Prednisone since my transplant. I started at a higher dose and gradually tapered off to 5mg. once a day. I also take Prograf and Cellcept for immunosuppressants.

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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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I had my liver transplant Nov 28 2018. I was taken off prednisone and cellcept after 4 months. I only take .5 mg prograf. Each of our bodies have different reactions and needs for medications.

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@cmael

My transplant was 4/6/18. At my last checkup I saw an endocrinologist who put me on Fosamax after being diagnosed with osteopenia. I also have been taking 5 mg of Prednisone. About a month ago I broke a bone in my foot just walking up the deck stairs, but didn’t see the doctor about it until two weeks ago. It had been hurting, but it didn’t seem bad enough to have broken it.The radiologist report said that I had considerable thinning of the bones of my feet. Needless to say I’m concerned about It. I’ll be seeing the foot doctor tomorrow.

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Morning, I had my transplant in 2016, bone density showed osteopena my endocrinologist started me on Prolia every 6 months. No problems. Plus I have gone back to weight lifting which helps also.

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@cmael and @rwalkie

With Fosamax or Proila do you still take calcium or is that part of the medication? Have either of you seen bone health improvements?

Also does anyone know it Calcium Citrate or Calcium Carbonate is better? I remember a long time ago someone saying that one of them can lead to kidney stones but I wonder if that was just pre-transplant?

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@jolinda

@cmael and @rwalkie

With Fosamax or Proila do you still take calcium or is that part of the medication? Have either of you seen bone health improvements?

Also does anyone know it Calcium Citrate or Calcium Carbonate is better? I remember a long time ago someone saying that one of them can lead to kidney stones but I wonder if that was just pre-transplant?

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Before my transplant I was taking calcium citrate, but then my calcium levels were too high. When you have kidney disease, you can also have high parathyroid hormone levels which can also cause high calcium levels. No more calcium after that. During that time I also had a parathyroid adenoma removed. I guess my case is a bit different. I was asked when I made my appointment for my 2year checkup if I’d like to see an endocrinologist in addition. I said yes. Since my parathyroid levels are still a bit high, I was told to get at least 1200 mg of calcium with food daily, along with Fosamax. but no additional calcium as a supplement. It seems that liver transplant patients can reduce the immunosuppressants easier than kidney transplant patients.

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For anyone interested, there are several discussions about osteoporosis, bone health and managing with medication, supplements and diet and exercise in the Bones, Joints & Muscles group https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/

There discussions are not specific to bone health and transplant, but may provide some related information.

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@jolinda

@cmael and @rwalkie

With Fosamax or Proila do you still take calcium or is that part of the medication? Have either of you seen bone health improvements?

Also does anyone know it Calcium Citrate or Calcium Carbonate is better? I remember a long time ago someone saying that one of them can lead to kidney stones but I wonder if that was just pre-transplant?

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Morning. Yes I still take a calcium supplement, and my last bone density did show improvement.

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@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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