Osteoporosis treatment for post kidney transplant women

Posted by yani2023 @yani2023, Jun 1, 2023

Post kidney transplant patient one year 6 months. Diagnosised with osteo and two bulged discs, L4 L5/. Was seen by an orthopedic doctor and he immediately wanted to start have Prolia shots. . After reading the side effects of Prolia, I am very fearful. Many of these drugs side effects are frightening and I am concerned how long these drugs have to be taken. Has anyone had a similar experience and what medications have your drs recommended.? Thanks.

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@hello1234

Hi @yani2023 😊
I am a 3 year post kidney transplant patient in your exact situation.
I have osteoporosis that needs attention and I am scared to death of the adverse effects of all the current bone medications.
Prolia was recommended to me too.
I know people that took osteoporosis meds and broke their femur bone. I know people that did not take osteoporosis medication and broke their femur bone.
I know family members that have been on Prolia for years with no problems at all.
I know that dental implants are probably in my future and jaw necrosis sounds like an awful adverse effect for an immune suppressed patient. A broken bone sounds terrible.
I just had a bone density test and according to the numbers I should start my Prolia now. It's a very tough decision for me too.
Are you leaning towards taking the shot?

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Hi, ABSOLUTELY NO PROLIA for me.
I will be researching and having an appt. with a NYC nephrologist different medications who has been part of research for osteoporosis medication. My transplant dr who are very young just referred me to orthopedic specialist.
Prolia will not be on the list of any of the medication I may choose. The orthopedic dr I had an appt with initially who recommended Prolia was asked how many transplant patients he had treated and he would not answer me. When I asked if any other medications he could recommend he told me to make another appointment. The fact answer this doctor could share any information about other transplant patients( with no names of course) concerned me. IT may have been he had not treated a transplant patient ever?
We are in a class of our own. Each transplant patient is different I understand. I just wanted to know other womens's experience was after taking Prolia. I understand each person will have. a different reaction. I am glad some individuals have not had any dental issues while others have. . Yes, I also am aware some women who have been on medication to no avail. Some have broken bones which kicks women and maybe some men into total depression.
There probably isn't one perfect medication. Being monitored probably is the best tool to determine if a medication is working and sustaining in addition to improving our bone health. Transplant patients have to be cognizant of how anti rejection medication will interact with medication for osteoporosis understand each person has a different body chemistry with medication is prescribed for different medical conditions. IF a doctor is honest and can explain the side effects with certain medication and patients experience and be totally truthful that a plus. Thanks again.

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Hi, I've had my third kidney transplant for 33 years. I'm 66 and I'm always told I should be on one of these drugs, but I refuse every time. Maybe I'm wrong and maybe one day I will regret it, but I'm on so many drugs all ready that I fear adding more to the list. I take calcium and vit D. I will try to make this talk tonight. I have to check the time again, 7 PST?

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HOPE you have continued success. It's my belif that there are quite a few people who have not taken prescribed medication for osteoporosis. Question remains is, What did people do before all these medications were available especially for osteoporosis? . Strict diet for transplant patients is key. Sadly, my sense is that many of the US population have mal absorption when it comes to taking all kinds of supplements. This could be the reason after taking vitamins blood level do not improve.
Aging in place hopefully will be key to happiness in our life. I plan to enjoy every minute of it with no regrets. My mom who was a nurse for almost 50 years( she started after WWII would tell my family as good as medication was non are perfect. Medication is processed differently by each person and never to forget that and because we take medications our hope is any drug or vitamin we take will ameliorate out particular illness or at least helps to control, maintain our health and or extend and improve our quality of life
As transplant patients we have to be more cautious and ask drs many questions and hope they are willing to be honest.? Again, keep plugging PS> Have NO regrets live life every day a if could be your last. This makes me a happier camper.

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@arty12856

Hi, I've had my third kidney transplant for 33 years. I'm 66 and I'm always told I should be on one of these drugs, but I refuse every time. Maybe I'm wrong and maybe one day I will regret it, but I'm on so many drugs all ready that I fear adding more to the list. I take calcium and vit D. I will try to make this talk tonight. I have to check the time again, 7 PST?

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Welcome, @arty12856. Three kidney transplants and you've had the third one for 33 years! Wow. I hope you'll share your story here:
- Organ Donation and Transplant: What is Your story https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/

🙂

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I definitely will. It's a long one, but I will share. Where do I share? As a new story?

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@arty12856

I definitely will. It's a long one, but I will share. Where do I share? As a new story?

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Fantastic. Please add your story here by clicking the link and adding a comment https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/

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Good morning
I receive prolia shots 2x per year. It seems to help. I have experienced minimal changes. I had my liver transplant in October 2020. I live in Canada, so things are a bit different up here.
Stay calm and carry on

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Congrats, such positive news. My wish is that you you have a continuous improvement with your bone health.

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@arty12856

I definitely will. It's a long one, but I will share. Where do I share? As a new story?

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@arty12856, Welcome to Connect! Thirty-three years is like a dream for me. I am currently at 14 years with a liver and kidney and I want to hear your story.

The link that Colleen shared, Organ Donation and Transplant: What is Your story, is a collection of real stories by Connect members who are patients, caregivers, and donors/donor families.
I look forward to learning more about you and you kidney transplant experiences!

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