Prolia and renal failure

Posted by diannemr3 @diannemr3, Dec 5 10:38am

I have stage 4 renal failure without dialysis. My doctor wants me to start Prolia for early stage osteoporosis. The medication comes with a black box warning about hypocalcemia for advanced renal failure patients. This makes me wonder if I am not just trading one major risk factor for another. Has anyone else dealt with this problem?

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I also have kidney disease so your post is interesting. My doctor does not use Prolia due to the rebound effect when you stop: bone density goes down and fracture risk goes up dramatically. For some, bisphosphonates can manage the rebound. I wonder if you can talk to your doctor about an alternative. Or even consider holistic approaches if your scores are borderline. Keith McCormick's book "Great Bones" might be helpful for you. Are you seeing an endocrinologist?

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I am really, really worried about that the doctor put me on prolia. I took it for 2 years and had to come off. I cannot take bisphosphonates because of weight loss surgery back in 2004; therefore, I am scared to death that my bones are just going to crumble (this is what I read). I am 65, a grandmother of a 2 year old and a 4 month old and I want to live an active life and not hurt or have a broken spine. Help!

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@leeleevb

I am really, really worried about that the doctor put me on prolia. I took it for 2 years and had to come off. I cannot take bisphosphonates because of weight loss surgery back in 2004; therefore, I am scared to death that my bones are just going to crumble (this is what I read). I am 65, a grandmother of a 2 year old and a 4 month old and I want to live an active life and not hurt or have a broken spine. Help!

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@leeleevb I am curious why you cannot take a bisphosphonate after weight loss surgery. Are you unable to take Reclast via IV?

I wonder if Evenity could help you. It has an anti-resorptive phase which lowers CTX, the marker for bone resorption and the marker that skyrockets when Prolia is stopped.

Someone posted a study that showed Evenity managed Prolia rebound and even had a boost in bone density though reduced as a result of previous Prolia.

How long have you been off Prolia?

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@windyshores

@leeleevb I am curious why you cannot take a bisphosphonate after weight loss surgery. Are you unable to take Reclast via IV?

I wonder if Evenity could help you. It has an anti-resorptive phase which lowers CTX, the marker for bone resorption and the marker that skyrockets when Prolia is stopped.

Someone posted a study that showed Evenity managed Prolia rebound and even had a boost in bone density though reduced as a result of previous Prolia.

How long have you been off Prolia?

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I have been off of it for a year as I am going through an oral bone graft and implant procedures and I am not sure that the bone graft even has taken. I go back December 18th to find out how bone graft did. The oral surgeon insisted that I need get my prolia until it was all complete which could me summer of 2025 and the last prolia shot was 11/2023. I can't take the pill form of anything, but possibly reclast if the doctor would prescribe it, but can it cause osteonecrosis as well and that is why the oral surgeon insisted I not take anything for my osteoporosis until dental procedures complete. Evenity scares me because of heart problems as my dad died of heart disease and it runs in my family.

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@leeleevb

I have been off of it for a year as I am going through an oral bone graft and implant procedures and I am not sure that the bone graft even has taken. I go back December 18th to find out how bone graft did. The oral surgeon insisted that I need get my prolia until it was all complete which could me summer of 2025 and the last prolia shot was 11/2023. I can't take the pill form of anything, but possibly reclast if the doctor would prescribe it, but can it cause osteonecrosis as well and that is why the oral surgeon insisted I not take anything for my osteoporosis until dental procedures complete. Evenity scares me because of heart problems as my dad died of heart disease and it runs in my family.

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The studies on Evenity showed no difference in cardiovascular risk between Evenity and placebo, and a small difference with alendronate but theory is that might be because alendronate is slightly protective. I have afib and a family history and had no concerns taking Evenity.

Reclast can cause osteonecrosis after 3-5 years, generally, but would probably not be recommended if you are having dental issues and surgery. Evenity in the later months may also cause risk for necrosis to a lesser degree, I have been told.

Forteo and Tymlos do not cause dental issues and may even help with healing but are usually not taken after Prolia because they don't help with rebound and are less effective after Prolia. (My dentist thinks all osteoporosis drugs are a problem but that is not true!)

You have already been off Prolia for a Year. Have you had a DEXA scan or done bone markers, especially CTX, to see what your risk is now?

Seems like getting your surgery done asap and then Evenity or Reclast (depending on your DEXA) might be paths to discuss with your doctor.

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I am praying the bone graft took and I can get this wrapped up by summer. I am going to my primary doctor on the 18th as well and asking them to do another DEXA scan and an CTX. Thank you so much for the feedback and advice.

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@windyshores

I also have kidney disease so your post is interesting. My doctor does not use Prolia due to the rebound effect when you stop: bone density goes down and fracture risk goes up dramatically. For some, bisphosphonates can manage the rebound. I wonder if you can talk to your doctor about an alternative. Or even consider holistic approaches if your scores are borderline. Keith McCormick's book "Great Bones" might be helpful for you. Are you seeing an endocrinologist?

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So far the numbers are borderline. Thank you for suggesting Keith McCormick's book. I'll check it out. The other side effect of Prolia is decreased immunity. I am on the inactive kidney transplant list, and should the need arise to transfer to active status, then this risk factor is also a major consideration. My nephrologist has clearly stated I am not a candidate for bisphosphonates. I am waiting on a second opinion from her before responding to my primary care doctor.

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@diannemr3

So far the numbers are borderline. Thank you for suggesting Keith McCormick's book. I'll check it out. The other side effect of Prolia is decreased immunity. I am on the inactive kidney transplant list, and should the need arise to transfer to active status, then this risk factor is also a major consideration. My nephrologist has clearly stated I am not a candidate for bisphosphonates. I am waiting on a second opinion from her before responding to my primary care doctor.

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I do a 20% dose of Reclast with IV hydration and slow infusion over an hour, due to kidney disease. But if you are on a transplant list (even if inactive) it might still be risky. Hope your doctor can look into that. It's hard when more than one specialty is involved! It's great you have gone awhile after stopping Prolia w/out problems!

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@windyshores

I do a 20% dose of Reclast with IV hydration and slow infusion over an hour, due to kidney disease. But if you are on a transplant list (even if inactive) it might still be risky. Hope your doctor can look into that. It's hard when more than one specialty is involved! It's great you have gone awhile after stopping Prolia w/out problems!

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Thanks. Since I've not been on anything in the past, I want to make the right decision the first time around. My nephrologist is willing to consult with an endocrinologist at the teaching hospital where she works; the response will be interesting.

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I have taken 4 shots of Prolia and I have some bone growth improvement. I originally took one injection in 2012 and had severe muscle pain. I was told to stop taking it as I might be allergic. In 2022 a different PC told me I needed to start Prolia because my T- scores were not good on Dexa Bone Scan. I told her my history with Prolia experiencing muscle pain and told to stop in case it was an allergic reaction. She said the need outweighed the skepticism and I should start taking, which I did. I have fibromyalgia, severe scoliosis, spinal stenosis, spondylitis, collapsed L5 and Kyphosis. I took my 3rd injection in March of 2024. In June I was in so much pain I barely could go to store due to fear of falling because I was having trouble walking from pain. Again, doctor told me it could be fiber flares. I took injection in Sept of 24 and since first week in Nov I have been basically in so much pain I have been sitting at home in a chair in heating pads unable to go out unless there is a doctor appointment or grocery shopping, banking and chores. I demanded a MRI because I was afraid I had fracture, which I did not. I do have a very bad back. The doctor has told me to continue Prolia with two more shots. I actually missed Thanksgiving and stayed home in bed in so much pain in left leg. Bought a new bed for $4000 added a tempurpedic topper for $300 desperate to try to find some relief. None. I sit on 3 heating pads. Barely can shop. I clean a bathroom 1/2 at a time. I could go on. I sent money for Christmas gifts and canceled hosting dinner here for the first time in 50 years I’m in so much pain. It is getting a little better. My question is has anyone gone through this? I am dreading to have to take another injection in March and go through this horrid pain. Idk if it’s the Prolia, my back collapsing, or fiber myalgia. Has anyone had a reaction to Prolia?

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