CKD and Osteoporosis

[classicsgirl1968]

Hi , I was wondering if anyone has any experience of ckd and osteoporosis? I have been advised to have Prolia for my bones . I am very anxious about this due to the side effects on possible uti's of which I have had many in the past. Added to this I have so many allergies so running out of antibiotics to give me. Any advise would be appreciated, thank you

[Kbristow]

I'm curious to hear from others as well. I have osteoporosis and am already transplanted which means I'm now on prednisone as part of my anti-rejection regimen. My transplant nephrologists won't take me off of prednisone completely but have lowered my dose to 2.5mg every other day, which all my providers agree is about as low a dose to still be safe. Still I worry about the long term effects on my bone health.

[Ballspinner]

I have PKD and a transplant and have osteoporosis. I have been on raloxifene, which is generic Evista, for many years. Originally I took it to prevent a certain breast cancer, but it's other use is for osteoporosis. It has not been harmful to my transplant, but I only take envarsus xr for my immunosuppressant, not steroids.

[Superman89129]

I have severe osteoporosis and am on dialysis. I should also mention I’m male since certain treatments are not recommended for me. I have been advised not to take any of the osteoporosis medications as they can have serious side effects. Recently Prolia had a black box warning added that states the risk of hypocalcemia in advanced stages of kidney disease. I’m sorry I don’t have better information. I keep on getting stress fractures but besides keeping my labs in check and exercising there’s not much else I can do right now and it makes me mad that there’s nothing I can do

[classicsgirl1968 in reply to Superman89129]

Hi. thank you for your welcome reply. I am so sorry to hear your situation. I find it scary with these medicines and i appreciate you telling me about the Prolia. I don't think that they explain things properly to us and you are left floundering. Yes frustrating for you feeling you would like to do more to help yourself. I struggle with medicines very sensitive that is one of my concerns, Even the calcium and vitamin D gives me big problems! So scared to start the six monthly Prolia injections. Scared i will get infections as i am allergic to so many antibiotics.Sorry to complain think I am just trying to understand things and make the right decision. Thank you for taking the time to reply

[caringkriket]

I have CKD and osteoporosis in some bones. They are starting me on prolia as long as my kidney function isn't below 30 mine is like 33. Hope this helps! At this point, I have RA and I will take the risk of prolia other than breaking my bones!

[allene7]

I cannot advise you what to do but can simply say I do have osteoporosis and have CKD. I took a total of 2 prolia shots with no problem at all. I then tried to get more (for me it is quite a process) not sure why. So, once approved I could not pay my portion of what was left to pay. In the past I paid nothing, o now I do not take prolia shots. I tried every avenue to get help to pay me portion with no luck. Since I cannot afford it I no longer take it. Recently had a doctor tell me how vital it was and how I should be on prolia or something. I cannot take the pills offered well at that is what I was told at the time. I have been told the pills are not as effective as the shots. Not one doctor has offered any advice as to how to possibly get help for the cost of prolia other than have you tried to get help. I'm taking a supplement of vitamin prescribed by my nephrologist but have been told it's not enough. So for me no more shots unless something magically happens. I wish you well good luck.

[classicsgirl1968 in reply to allene7]

Thank you for your welcome reply. It was good to hear that you had the Prolia with no problems, gives me confidence to give them a try! So sorry though that you are having problems getting more treatment, that is awful. I wish you good luck too and hope that you can somehow get help. Oh yes I cannot take the pills either make me ill!

[Chucka]

hello! I am a 65 year old female and have stage 4 ckd from a genetic inherited condition. . EGFR is 25. I started getting osteoporosis about ten years ago. I took raloxifene (Evista) and it did slow the progression of bone loss for a number of years. But after 7-8 years on it, it was no longer sufficient to slow the osteoporosis. I was evaluated for Prolia but the FDA in the US put a “black box” warning on it for patients with my level of kidney impairment. It can cause dangerous hypocalcemia. If that occurs, one will need to be in the hospital with transfusions. Another issue with Prolia that some doctors don’t tell you is that once you start it you need to take it forever. If for some reason you need to stop taking it you then need to switch to another osteoporosis med or you can lose all the bone growth benefits you had gained with the Prolia, especially in the spine. The risk of spinal fracture increases. I finally got evaluated by an endocrinologist referred by my nephrologist and they decided that none of the osteoporosis meds were safe for me to take. Raloxifene is harmless for me but doesn’t really treat the osteoporosis at this point. . It sucks. If in the future I get a transplant and eGFR rises to a better level I might explore some osteoporosis meds. But until then my bones just wither away. I do take Vitamin D and calcium but it’s a drop in a bucket.

Good luck with the Prolia if your eGFR is high enough to take it you might get some benefit from it. But I would say also talk to your doctors about the long term plan because you might not be able to take it forever.

[classicsgirl1968 in reply to Chucka]

Hi Chucka, thank you so much for your very informative reply, I must say what you have told me is more informative than what anyone here has told me. I was referred by my DR to the hospital and i had a phone call from a nurse specialist for a few minutes who told me i was being prescribed Prolia, No plan for the future and not enough info about any side effects, so thank you for your email much appreciated. All the best to you, I wish you all the best with your treatment

[Chucka in reply to classicsgirl1968]

Hugs and best of luck to you.

[classicsgirl1968 in reply to Chucka]

Thank you

[Overwhelmedbythis]

I was 64 and had CKD stage that over the course of the next 5 years, I progressed to stage 4 and at times GFR was low enough that it was diagnosed as stage 5. Fortunately, I did not reach the dialysis stage. I also had severe Osteoporosis with 75% change of breaking a hip if falling. Along with my regular Nephrologist, at another hospital I also saw a Nephrologist that specialized in Kidney Disease, Bone Disease and Metabolism. He placed me on Forteo (i was on that for 2 years- daily pen needle shot at home and my bone density improved) I have since had a kidney transplant and the timing coincided with the 2 years of recommended use of Forteo. It has been I year since transplant. I am on Envarsus XR and Cellcept for anti rejection drugs and my numbers have improved greatly. (GFR up to 48 at one point). I am due for another Bone Dexa test in December. Am praying for the best.

Perhaps you might benefit by asking about Forteo (it is a teriparatide injection) made by Lilly .They offer a coupon for $4.00 US if you are eligible and are commercially insured. (I was never charged or billed for the $4 for the entire 2 years) . Food for thought and something to discuss with your Kidney doctor.

[Olivermjdixie]

please be VERY Leary of prolia, My mom was taking it for years (she did not have kidney disease). Then she got bone cancer and had a horrible break in her thigh bone, And died. Come to find out…. This was possible side effect of the prolia.

[Sophiebun11]

Hi, I took Prednisone and Methylprednisolone for approx. 20 yrs. for asthma and autoimmune diseases. I have osteoporosis. I wish I'd have started Prolia a long time ago before my bones got so bad. I can't take Fosamax due to esophageal problems.

Back in July I just stood up from a chair and fractured my tibia and it slid off my foot. I badly sprained the other ankle. I needed surgery and a bunch of screws and rods to put my tibia and foot back together. The ortho surgeon said my bones were extremely thin.

I've been told since 30 years ago that I could just step off a curb and break my ankle due to the prednisone and thin bones due to osteoporosis.

I'd really advise getting the Prolia, it is supposed to not only keep bones from getting thinner, but also rebuild bones. I've been on Prolia for a year, injection every 6 months. I also take Vit. D since mine was very low. I spent 6 weeks in the hospital and rehab. I had no side effects from Prolia and I am very allergic to many meds.

Please get Prolia or take something else, once your bones start breaking you'll never be the same. I've been stuck in a wheelchair for 4 months now. I am still not healing well and can't even do physical therapy yet.

Good luck to you.