Treatment for osteoporosis post kidney transplant

[Hydrangea2023]

Has anyone been treated for osteoporosis post transplant? What medications have been prescribed? Can anyone share their experiences dealing with orthopedic drs, rheumatologist or endrchronolgist who has treated women especially. What has been your experience with medications and side effects.? any information would be helpful/ Taking anti rejection medication and medication for osteoporosis is very concerning. Thanks

[Tashikat]

Ive spoken with 2 friends who hated the side effects of osteo meds. Check out a company called Osteostrong.com & if there is facility near you. I have heard good things about their program.

[blackkat2]

I take alendronate for post-transplant osteporosis without any problems, but I'm male.

[bdbo]

hi there. I am female and have my transplant 29 years. I am on Prolia injections for 6 years with no uncomfortable side effects only that my creatinine goes up a few points in the first few weeks after the injection. Then it has come back to baseline. The positive benefit is that it stopped fractures and bettered my osteoporosis to osteopenia. Good luck!

[Rocknlily in reply to bdbo]

6 years? I was told you can only take Prolia for 2 years then you have to switch. If you don’t switch you get bad rebound effects. What did your team say about the warning in Prolia about if you are on immunosuppressant s or immunocompromised you at risk for serious infections? My endocrinologist just said they still thought it was best choice for me.

[WYOAnne NKF Ambassador]

I also take alendronate (generic Fosamax) once a week for osteoporosis. No problems or side effects. Creatinine is stable.

[Hydrangea2023]

Thank you for this information. I have an appointment with a nephrologist who has treated kidney transplant patients at a major NYC hospital. HE is also a research in the area of osteo win Kidney Transplant patients. Additionally I have researched/read all the different medication information and you mind can go into a tailspin. My hope is to remain at least stable and not decline status wise with my lower spine.

I am not looking for a miracle with my osteo condition. . I understand there is no perfect pill for osteo yet we don't want to take any of the ones which have disastrous side effects. Trust your own intution. Everyone body chemistry is different so how our body process medication is a factor as well along with having other medical diagnosis or medical condition prior to our kidney transplant.

The outcome can be different after some of theses medications don't appear to improve our osteo condition. Grateful to be alive and we can't have it all. My mom with was a nurse since WWII would say, DID you wake up this morning> Can you talk? Can you walk? Can you see? Are you breathing? Do you have friends and family who care and take care of you? As children and young adults we would respond yes. Her answer was, "Now let think about it. Despite all the physical and sometime mental stress we experience we still are ahead of the game. You aren't dead YET, you are still living and breathing. So think about it. NO pity Party my children. IT"s difficult not to complain as pain often is excruciating." I totally understand. now as a 70+ year old. We just hope some medication are just able help to maintain if not improve our spine, hips, ect ect.

[klb36 in reply to Hydrangea2023]

sorry no helpful here 38 years transplant insurance wont cover me for bone density test because i am a male and abuse steroids am sure i have bone issues but so far no problems hope someone can guide you in a good direction

[Rocknlily in reply to Hydrangea2023]

Very curious if you have seen the specialist in NY since this post. If so, can you please send details. Thanks!

[Patient-Empowerment NKF Ambassador NKF Peer Mentor]

Hi there!

I have been treated with a drug called Evenity, which is a injectable delivered monthly in office.

I’ve been very pleased, no side effects and I will be moving onto Prolia next month. I don’t have a bone density test yet to prove success, but I feel very positive about this plan.

(I put this off for over 10 years, and I finally surrendered when my numbed kept getting worse).

I think this is the right thing to do but of course, once you start this, you can never stop. It’s kind of like our anti-rejection meds.

Do your research. I looked into all the options over the years and the side effects scared me. But I felt Evenity was the smartest thing to do because I had waited too long and it builds bone fast.

Check it out. Their study graphs are the most impressive I’ve seen.

Hope this helps…

[Hydrangea2023]

Thank you for the suggestion. I appreciate it. I had an appointment this June to go see a research nephrologist from a mayor NYC hospital who has treated over 20 people with Osteo in kidney transplant patients. I have read as much as I can on Evenity and prolia. and many of the other medications, I understand I have to do something fast... we all must know every medication will. have side affects no matter what we take. What can we handle beside pain? Deterioration? IF there is no improvement after taking a medication for years?

First things first, I am going in for hernia surgery early July 2023. . After this I will consult with this new dr and have to make a decision., Yet from all the research I have read on Prolia, No thank you. Not worth it to me personally. I am happy it works for others, We all have different body chemistry.

I know at least five different women who took Prolia for over five years and they all regretted it. PS. Have no idea how much of the cost would even be covered by my insurance secondary. Three of the w women still ended up with fractures on their lower vertebrate and hip after years of taking Prolia. Really am not aware of any medication that restore bone loss... just slows it down, Best of luck to all going through similar situation.

Additionally we all react differently to all medication so its an individual journey taking meds for osteoporosis. I am just extremely careful not to fall or slip and for right now, CBD Balm and Tylenol help. Not perfect but better than heavy pain meds as I have a to be careful with my kidneys. I am on so many medication and supplement. Anyone out there having gone through similar experience please share your experience. Thank You,

[annulla]

My transplant team and my rheumatologist recommended Prolia. Had my first infusion a couple of months ago, no side effects yet.