Osteoporosis treatment for post kidney transplant women

Hi @yani2023, I added your question to the Transplants support group too. Transplant recipients
@cmael and @ssapp1 may have thoughts for you.

Additionally, you might be interested in this related discussion in the Transplants support group:
– Bone Health After Transplant https://connect.mayoclinic.org/discussion/bone-health-after-transplant/

It can be scary reading the side effects that others write in a forum like this one. Keep in mind that it is a somewhat biased view since people who do not have side effects don't need to reach out for support in managing side effects. There are several drugs that help osteoporosis. They work differently and its important to talk with your doctor about the pros and cons of each and which would be best for you and why.

Here's some info from Mayo Clinic that you might find helpful:
- Osteoporosis treatment: Medications can help https://www.mayoclinic.org/diseases-conditions/osteoporosis/in-depth/osteoporosis-treatment/art-20046869

Mayo Clinic's Bone Health Choice Decision Aid https://osteoporosisdecisionaid.mayoclinic.org/
This tool will help you and your doctor discuss how you might want to reduce your risk for bone fractures. Note: The decision aid should be used together with your physician during a consult.

I have osteoporosis and I am post transplant (pancreas). The links that Colleen posted for information are very good. She is great that way. For my own situation I ended up with a Prolia injection prescription. It is an injection by a nurse in clinic every 6 months. My Dr. monitors with a bone density test every couple of years.

Hi, I am a post kidney transplant patient from 16 months ago. Ortho dr wanted to give me Prolia shots and unfortunately I am reluctant to take it as I have heard and read more negative reports from women taking Prolia two of which still ended very slight improvement with there spinal vertebrate. They also experience complications like a crack around the last bone on spinal vertebrate. I am glad it is working for many woman still not convinced it's right for me. I am always curious as to different person reaction to Prolia.

Thank you, I shall investigate the bone health after kidney transplant information.

I am searching for information from individuals who have had kidney transplant. Kidney transplant was Dec 2021, followed with surgery for diverticulosis. Hospitalized three months, later had hernia surgery and now recovering. Would like to seek out anyone who has been treated for osteoporosis post kidney transplant. Because of anti rejection medication extra caution has to be taken when considering treatment.
Had an appoint with one orthopedic dr and automatically he wanted be on Prolia. After reading all side effect I passed on this medication. I understand there is not one perfect medication. Side effect on medication doctors prescribe scared the living day light out of me, yet I understand I have to do some treatment to ward of broken bones. Any information from anyone who has experienced and had a kidney transplant may provide some valuable information. Thank you.

Hi Yani, I'm tagging fellow transplant recipients like @cmael @jolinda @rwalkie @hello1234 @athenalee to join this discussion and to share their experiences with osteoporosis and bone health after transplant.

I hope you also saw @cehunt57's helpful post here: https://connect.mayoclinic.org/comment/872419/

Yani, have you talked to your transplant team about preferred medication options for transplant recipients with osteoporosis?

My transplant team explanation when I asked about their preferred medication for their kidney transplant patients I was told the majority of transplant patients especially women took bisphosphates . Drs. explained that. these patients were told to make an appointment with their endocrinologist, or OBGN doctor. Don't believe they wanted to get involved or treat anyone with this condition. I understand each individual will experience a different reactions to medication or side effects. I would like to know as much as possible to prepare myself. Having to take anti rejection medication is a concerned when considering several of these medication being prescribed today for regular and kidney transplant patients. Hopefully some information or sharing the experiences of this post from individuals mention would serve to education myself before take medication choice to treat my Osteoporsis . Thank You

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?

Hello @yani2023,
I had a liver transplant in August 2020. I had a bone density scan six months later which showed moderate severe osteoporosis in my lumbar spine, and mild osteoporosis in my hip and neck. I saw an endocrinologist a couple months later who wanted me to have infusions of Reclast. Like you I was concerned about drug interactions and in this case Reclast and Tacrolimus together can have major impacts on the kidneys. So I opted to try Alendronate.

I take it once a week upon awakening at 5 am with a glass of water. I wait for at least 45 minutes until I have coffee. I take my morning immunosuppressants at 8:30 am. So far this regimen has worked ok for me. My labs are good and no side effects from the Alendronate.

I also take 1200 mgs calcium carbonate, 2000 iu Vitamin D, Omega oils, and walk/hike 3-5 miles/day.

I had another bone density scan last spring. My bone mineral density increased nearly 14% in my hip and neck, so I’m now classified as having osteopenia there. In my lumbar it rose 8%, so I’m still at a moderately severe level in my back. But I’m definitely pleased it’s improved.

I know it’s a tough decision, but I knew if I didn’t try the medication my osteoporosis would probably continue to get worse, especially with the side effects of Tacrolimus. I also didn’t want to limit my outdoor activities due to fear of falling. While I still have to be careful, I’m hopeful my bone minerals will keep improving.

Blessing To You Athenalee,
I knew there had to be someone out there who has experienced my same concerns that will be on anti rejection medications for life. I will be seeing a nephrologist from another major NYC hospital who I will meet with at the end of this month. I will listen and ask questions about Alendronate.

I was in the hospital for three months as result of a diverticulosis surgery a week short of post transplant at end of 2021 at the height of Covid. . Drs were baffled with a sudden initial kidney rejection as the kidney I receive came from my own sister.. IT was a mystery.

I had five rounds parasynthesis treatment only a week post transplant rejection and five rounds of dialysis.I lost 25 lbs and finally was discharge looking like a skeleton. After discharge and returning home I received PT 3X a week for six months ( battled with medicare and secondary insurance and finally was approved) for PT I needed.
. I was blessed in that I learned how to walk again and by the end of three months I could climb stairs very slowly.
I regained my strength and weight a year ago. I started gardening again. It was a long round to feeling normal again. The PT was very therapeutic and I thought I could do all activity pre transplant. . I believe my garden activity resulted in a hernia by probably using heavy pruning scissors to cut large bushes. What was I thinking? I just wanted to resume life as it was before transplant. Not to be.
Unfortunately, I was not informed that anti rejection medication such as tacrolimus thins the lining of our intestines. My tacrolimus dosage medication was lowered. After my own research I discover Tacrolimus thins the stomach lining especially at high dosages.
This vip information should told to transplant patients pre surgery and or be disclosed on our medical information records provided for patients upon discharge. . I have come to terms. As of August 2023, my labs are better than ever ... all in normal range for my kidney function... I have 90% recovered from hernia mesh surgery. God bless the top in US gastrointestinal doctor in NYC who specialized in robotic surgery.
Now I have to deal with the osteoporosis which I fear may be getting worse.
I also walk using weight bearing weights. I use 2lbs each on (ankles, hip and wrist. Did not use my weights post hernia surgery recover .
My medication schedule is almost exactly as yours. I do have to incorporate the Omega oils. Which ones ? there are so many in the market. Which VIT D with K? I incorporate Kale 3x a week/
Medication Scheduling throughout the day and is monitored on my phone . IT helps a great deal. VIP to keep phone charged at all times.
Thank you again and I shall discuss Alonedrate with the new doctor. Much appreciated you comment and valuable information. One interesting thing I would like to share is that I use CBD balm 300 mg for my vertbrate pain. As great as Tylenol 500 mg is for most people I do not want to take more that one dosage per day. One dose of Tylenol to use a compliment to CBD balm removes all pain on muscles and bones in my particular situation.
The elimination of back pain facilitates sleep 100% better which helps me function throughout the day.
IT was God sent for me. No heavy narcs for me personally. I also want to also take care of my liver. Personally I researched and asked several doctors about CBD balm. I was told CBD Balm is not transdermal or enters the bloodstream to affect a patient with any other medications that they are taking like Cellcept/Myortic and Tacrolimus/ Prograf.
I have great hope. Thank you.

Thank Again, your post has been a great help!