Kidney transplant and Oteoporsis

[Hydrangea2023]

female post kidney transplant 1 yr 3 months. would like to know others experience with medication for osteoporosis. THEre are so many type of medication in pill form and injectables. Fear is very crippling when we read side effects of all medication. Must make choice by next month. Thanks.

[Balap]

walking is the best along with Vitamin-D tablets

[PostivelyJo]

agree with previous comment and weight lifting important too. I think Prednisolone was the issue for me with joint and back pain. I luckily I was allowed to come off it and feel much stronger . I have mild Osteoperosis . I have been on HRT for 15 years am 60 in Aug . Transplanted in Sept 2019

[Hydrangea2023 in reply to PostivelyJo]

Hi I forgot to mention I hope your back pain is gone, I use CBD balm for my back, 300mg. it does not enter the blood stream to affect your medication, I only use one application daily of about 2 green pea size amount on my bulged disc and two Tylenols for back pain. IT's . Like a miracle. Ortho dr and Nephrologist approved. From a big major hospital in NYC. IF you happen to use it ask your dr and check where CBD is being sourced from VIP>

[WYOAnne NKF Ambassador]

I am 23+ years post transplant (transplant in 1999) and last year I needed to start taking medication for osteoporosis. My bone density showed osteoporosis in my L hip. I am also 72. I take the generic form of Fosamax. It's one time a week and I have no issues or problems with it

I do walk daily and take vitamin D

[Hydrangea2023 in reply to WYOAnne]

WYOANNE. Thank you so much for your reply. Your response from a person who had a kidney transplant is exactly what I was searching for. I have an endochronologist appoint this coming week and will discuss with doctor.. I have read up some side effects on many of the injectables for osteoporosis and it is beyond frightening. My teeth are all in good shape ( just finished with dental exam) no further work needed. I wear weights on my ankles, wrist and 2lbs on each hip even in my own home or if I an lucky to be able to take a 2 mile walk when weather permits. I had a diverticulosis infection 1o day post transplant and ended up in hospital for three months. Then it was dealing with a stoma bag. It was removed three months later. That was an experience. Lost 20lbs yet luckily with excellent eating plan & nutritional supplements I hav regained all 2olbs which were lost. I t take Vit D with K and calcium, Vit D as we do not receive enough sun on the east coast NY area. Has your bone density increased over the years? I hope so. Thanks again. PS, have you heard about individuals who are receiving stems cell from their donor prior to kidney transplant? Yes, there are several hospital in US ... Mayo Clinic. and George Washington University hospital that have used stems cells. The recipient does not require anti rejection medication post transplant. I had my own stem cell bank but was not aware of this stem cell research which was taking place in US. I also believe one of the large hospitals in California is also doing these stem cell research.

[WYOAnne NKF Ambassador]

I have heard from many that have had side effect from the PROLIA injections. My insurance wouldn't cover it, so I never thought about it any more. Alendronate is the generic I take (Fosamax). No big deal to take it once a week. And I have no side effects, don't even know I took it. Talk over your decision with your doctor. Don't be afraid of starting Osteoporosis education.

I have heard about some that get stem cells from their donor prior to their transplant. I know it's new, and haven't heard too much about it though. It would be wonderful to not have to take the immunosuppressants! My kidney is doing great, but all of my issues/problems are due to those meds!

Don't know how my bone density is doing since I haven't had a scan in the last year. I do also take calcium twice a day with Vitamin D every morning.

[Gardner-NY]

Hello, My husband 4.5 yrs ago received his transplant at age 59 and bone health is not an issue with him at this point in time. I wish you all the best to find answers.

[Kidme]

I’m 9 years post transplant and have osteoporosis. My doc was recommending Prolia but it was scary reading about some of the negative experiences. Also I was concerned that if I had side effects it’s not like pill that you can just stop taking. I also was having a lot of UTIs and that was another concern. My PCP suggested Evista so I’ve been on that for about 4 years. Minimal issues with that. I also added lifting some dumb bells to my daily yoga practice and I walk on the treadmill every day. Two years ago my scan showed that my numbers were improved and one area had moved into osteopenia from osteoporosis. I’m due for my dexa scan this spring. I’m hoping there’s some improvement. My neph said I could take any of the drugs.

[Quercusalba]

Hi, I'm one and a half years post transplant and bone density has been slowly decreasing for years due to risk factors of being a "thin white female" in addition to PKD, and now prednisone, etc.My nephrologist referred me to an excellent endocrinologist who put me on a year of Evenity shots, to build bone density. At the end of a year, which is this summer, those will end and I'll start on something to prevent loss.I follow many of the good suggestions others have made here like daily walking, stationary bike, weights, careful diet and prescribed high levels of calcium and vitamin D. I look forward to my next dexascan this summer and hoping for better readings, or at least stable.

Let us know how things go. Hang in there, you have lots of good company in this caring group. Wishing you the best.

[Hydrangea2023]

Thank you to everyones' post. Keeping positive with new doctor and will listen to his experience treating a post kidney transplant patients with OSTEO . I hope that having been in practice for twenty years as a researcher also that he has knowledge in the area of supplement that can help my situation. I will have my question ready and try my best to. keep calm. Predisone and Tacrolimus and mycophenaltic acid will be part of my life forever. Beyond medication which will initially be trial and error we transplant patient just have to be questioning any medications drs prescribe for us.

[LisaSnow]

What choices were you asked to be making?

[Hydrangea2023]

Orthopedic Dr wanted me to take Prolia/ I read enough about this medication that I will pass. Antirejection medication are strong and in combination with the two, I am not willing to risk any addition new diagnosis. I finally found a endochronologist who has treated kidney transplant patients and osteoporosis. I haven't had appointment yet. Appt is next month. I can let. you know how it went and what his suggestion is for treatment.What part of the country do you resided in?

[LisaSnow in reply to Hydrangea2023]

I understand the side effects disclosed for all medication make them all sound like poison. All food ingredients are chemicals too and if taken inappropriately can lead to poisoning also. The key to evaluate medication is to understand their risk: benefit ratio. Since you already have a diagnosis of osteoporosis and it is a serious condition especially for your age group, I recommend speaking with the transplant center pharmacist about your concerns on side effects. They are knowledgeable about drug profiles and are experienced with patients with transplants. For example, they can let you know the incident rate of that most feared "new diagnosis" in patients taking both immunosuppressive drugs and Prolia in transplant population. Knowledge is the best tool to combat fear even in our self-care.