Osteoporosis after Transplant

[Rocknlily]

I’m one year out from Transplant. I have osteoporosis now and doctor really pushing me to start treatment. She wants me on Prolia. There are warnings on there about being immunosuppressed and at risk for developing serious infections. My doctor just said I still think it’s the safest choice for you. Reclast is supposedly worse for kidney. Are any of you taking Prolia and if so what is your experience? Or if you have osteoporosis post Transplant what treatment are to on?

[Darlenia]

My hubby has a transplant and was quickly put on Vitamin D to slow or prevent bone loss. Women, of course, lose bone density faster than men so I can see why your doctor would want you to take something stronger like Prolia. Our transplant center asked my hubby to send all prescriptions to them for approval and review - they're there for us for the life of the kidney. So you might want to ask your transplant coordinator to have the their pharmacists review or recommend a replacement. Those pharmacists are experts in transplant med interactions. Our transplant center has come through for us several times - telling my hubby not to take one drug at all and switching others. Btw, we have a friend, a man, who has lived with a liver transplant for several decades. His bones are in big trouble. He's crippled - has a hard time with his legs and hands. So it's good to wave these things off to the extent possible.

[Rocknlily in reply to Darlenia]

Thank you so much! Sounds like you all have a great Transplant Team! I wish I felt the same about mine. That’s very sad about the crippling after the liver Transplant.

[Transplant2018]

Like you and so many others, I developed osteoporosis a few years after my transplant. My nephrologist said any of the bisphophonates were safe for me (may be different for you), and I chose Boniva because it is oral and only taken once a month. I've just started, but no side effects that I've noticed thus far. Although I was reluctant to take yet another med, I don't want to be the old lady with bad bones who falls and fractures her hip!

[Rocknlily in reply to Transplant2018]

Unfortunately, my stomach didn’t tolerate the oral Biphosphates. They prefer Prolia o ver Reclast. There are 3 warnings in Prolia that apply to me, they still think it’s best. I’m not convinced after reading other’s experience with Prolia.

[nosillap]

Hi. I am 8 years post transplant & from taking all that prednisone my bones are like crackers!! I keep getting compression fractures in my back. Working on getting Prolia or similar now. I would say do it!

[YorkyinNorfolk]

This post from a couple of months ago might be useful:

healthunlocked.com/nkf-kidn...

[PostivelyJo]

are you on Prednisolone . I have mild osteoporosis and was suffering from aching joints, crippling back pain etc. i eventually persuaded my team over 2 years to take me off Prednisolone and things are much better. Am now weight training and things are so much better .

This does depend on your match etc and a number of factors so appreciate not suitable for everyone

[Strew59 in reply to PostivelyJo]

I am glad to hear you are no longer on prednisolone and you are feeling better, I am currently being weened off and cannot to top taking this drug, I currently ache constantly and due a bone density test so may have some form of osteoporosis, I'm hoping for a pain free future

[PostivelyJo in reply to Strew59]

keep going and pushing through

[Rocknlily in reply to PostivelyJo]

On Prednisone daily.

[blackkat2]

Hi, I'm on alendronate (brand name Fosamax) for bone loss, one pill per week. Also take Vit D and K.

[WYOAnne NKF Ambassador]

I am 23 years out from my transplant and take generic Fosamax (Alendronate) once a week. I have been taking it for over 3 years now and have no side effects at all. My creatinine is stable at 0.9 - 1.1. My insurance would not cover Prolia and a friend had side effects from it. I also take Vitamin D and Calcium twice a day.

[Rocknlily in reply to WYOAnne]

I couldn’t tolerate that because of stomach issues. There is Reclast IV. Has warnings about kidney though. My cr has varied.

[WYOAnne NKF Ambassador in reply to Rocknlily]

Just check with your transplant team/nephrologist before you decide any osteoporosis treatment.

[wlocke]

Sadly enough i'm 4 years out and need a hip replacement because of the meds but hey I was told about the adverse effects on the bones. Good luck in whichever decision you make.

[Rocknlily in reply to wlocke]

Adverse effects from the osteoporosis meds?

[wlocke in reply to Rocknlily]

No the antirejection meds