About to start Prolia: What's your experience?

Posted by Jefesitachica @npolanco, Feb 3, 2021

Dr wants for me to start Prolia. I have been researching. Would like to know if anyone in this group is taking. Worry about side effects.

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The loss of estrogen at menopause is a big factor. Hormone replacement poses cancer risks for some and is not recommended after a certain age anyway. I am not sure of the degree of help from diet, exercise and supplements in the context of post-menopausal estrogen loss and will be asking my doctor tomorrow. Surely better than doing nothing, especially for osteopenia.

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@windyshores

The loss of estrogen at menopause is a big factor. Hormone replacement poses cancer risks for some and is not recommended after a certain age anyway. I am not sure of the degree of help from diet, exercise and supplements in the context of post-menopausal estrogen loss and will be asking my doctor tomorrow. Surely better than doing nothing, especially for osteopenia.

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@windyshores Good morning I have been taking PREMPRO for at least 10 years for my BMD. This was prescribed by my Endo Doc. as an estrogen replacement. I am due for my bone scan this fall. I need to ask if this has helped me or not. It never occurred to me to ask after all these years if it has helped me. I keep learning from those that share on Mayo Connect. This is a very good thing. Hope you are doing well as the tortoise thinks about the hare. Keep in touch. KLH

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@joan26

I wish to goodness I had done the research you have done before I agreed to Prolia. I hope others will read your post carefully and take heed and not be where I am today!

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I have posted before that my endo doctor will not use Prolia for me, and people here have asked why. I talked with him today and he said he does use Prolia and it is a good drug. However, he has concerns about the drop-off of protection when you go off, and the resulting potential for fracture. It can be followed by Reclast, sure. He joked that some MD's prescribe it before retirement so they don't have to deal with the end of treatment! He also said that the rise in bone density is consistent and steady over years (unlike Tymlos, which builds the most in the 1st 6 months, then the next 6 months, then starts to level off. Of course Tymlos builds better quality....)

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@windyshores

I have posted before that my endo doctor will not use Prolia for me, and people here have asked why. I talked with him today and he said he does use Prolia and it is a good drug. However, he has concerns about the drop-off of protection when you go off, and the resulting potential for fracture. It can be followed by Reclast, sure. He joked that some MD's prescribe it before retirement so they don't have to deal with the end of treatment! He also said that the rise in bone density is consistent and steady over years (unlike Tymlos, which builds the most in the 1st 6 months, then the next 6 months, then starts to level off. Of course Tymlos builds better quality....)

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A close friend took prolia and had a spontaneous hip fracture from it. Had to have hip replacement.

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Dr. wants me to start me on Prolia. Hesitant to do this as I have gastrointestinal issues among other things. Whenever I am prescribed something I almost always have a bad reaction. I am 76 yrs. young so am not a candidate for Exista or other hormone related meds.
Any suggestions? Thanks

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@helenrose

A close friend took prolia and had a spontaneous hip fracture from it. Had to have hip replacement.

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How long was she on it? I was surprised my MD did not mention the atypical fractures that happen (though rarely, and usually after some years). As I said, he will not prescribe for me and I was surprised he uses it at all.

Personally I will not take it. When I wrote that he said it was a "good drug" I should have put it in quotes.

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@windyshores

How long was she on it? I was surprised my MD did not mention the atypical fractures that happen (though rarely, and usually after some years). As I said, he will not prescribe for me and I was surprised he uses it at all.

Personally I will not take it. When I wrote that he said it was a "good drug" I should have put it in quotes.

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I had a meeting with my Dr. the other day and was able to ask some good questions about my treatment going forward after I've finished with Evenity. The fact that I've learned so much and have really put some time into researching different medications is due to the knowledge I've picked up here.
Anyway......my T-score was minus 3.4 on both spine and hip in January. According to her, Evenity is very good at growing hip bones, but less so the spine. Should I get really good results on both, she recommends that I go to Reclast for a year or so, then maybe take a break. Should the spine numbers not improve enough to move me to Ostepoenia land, she would suggest I go on Prolia for a year (it's supposedly very effective for spine density) then go to Reclast. She is careful to transition patients and doesn't just end the Prolia with nothing else in place.
The only cases she has seen of women with atypical fractures were women who had been on Fosamax or the early drugs for over 10 years (and according to her, their doctors just left them there) and she though there had been less than 5 of them. We also talked about osteonecrosis, which she says does occur but is very rare, especially on Evenity. As a matter of fact, if I need deep dental work done, she recommends I do it before I end my Evenity shots.
I've had 5 Evenity shots, and after the first couple have had no side effects other than some injection site pain for a day or two, so

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@willow10

I had a meeting with my Dr. the other day and was able to ask some good questions about my treatment going forward after I've finished with Evenity. The fact that I've learned so much and have really put some time into researching different medications is due to the knowledge I've picked up here.
Anyway......my T-score was minus 3.4 on both spine and hip in January. According to her, Evenity is very good at growing hip bones, but less so the spine. Should I get really good results on both, she recommends that I go to Reclast for a year or so, then maybe take a break. Should the spine numbers not improve enough to move me to Ostepoenia land, she would suggest I go on Prolia for a year (it's supposedly very effective for spine density) then go to Reclast. She is careful to transition patients and doesn't just end the Prolia with nothing else in place.
The only cases she has seen of women with atypical fractures were women who had been on Fosamax or the early drugs for over 10 years (and according to her, their doctors just left them there) and she though there had been less than 5 of them. We also talked about osteonecrosis, which she says does occur but is very rare, especially on Evenity. As a matter of fact, if I need deep dental work done, she recommends I do it before I end my Evenity shots.
I've had 5 Evenity shots, and after the first couple have had no side effects other than some injection site pain for a day or two, so

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It's good to read about your plan. I have read that osteonecrosis mostly happens with women who have the larger doses for cancer, and as you said, that the atypical femur fractures occur after several years.

So I met with my doc yesterday. I wanted to post the plan for me. He does give me some choice. I will do Tymlos for 18 months (I have done 9 months). DEXA in 5/23. Then, due to my sensitivity to meds, he will do an infusion of 1mg Reclast (full dose is 5mg). If I don't react I will do the other 4mg in a month or so. He will monitor me via DEXA and thinks I can do just one infusion to "lock the gains in" and take a break. I will do Evenity in the future if needed.

I really had a tough time deciding between Tymlos and Evenity. My hip is -3.9 as I remember but I have 7 spinal fractures. I believed I could do Evenity after Tymlos but not the other way around but doc says insurance may not cover. Hoping for some improvements! Good luck and thanks for the info!
ps I did not know Prolia was so good for spine. I may ask about a year of that after all, or at least discuss that option with Reclast to follow.

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I still cannot find an answer to how doctors address the elephant in the room. Which is, given that Prolia and the bisphosphonates cause so many problems, how is 'relaying' patients onto one any kind of long-term solution at all? Here's a Mayo doctor addressing just one problem with those drugs.
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Osteoporosis drugs: Risk of bone problems in jaw, thigh?

Can some types of osteoporosis drugs actually hurt my bones?

Bisphosphonates — such as alendronate (Fosamax, Binosto), risedronate (Actonel, Atelvia), ibandronate (Boniva) and zoledronic acid (Reclast, Zometa) — and denosumab (Prolia, Xgeva) have been linked to osteonecrosis of the jaw and atypical femoral fractures.

https://www.mayoclinic.org/diseases-conditions/osteoporosis/expert-answers/osteoporosis-drug-risks/faq-20058121

There's a Mayo site discussing reported side effects of Reclast as well that people can search for. But if bisphosonates are so problematic as first-try drug to protect bones, how on earth are they 'protective' following other drug use? Or are they just the only thing available so we have to hope for the best?

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@callalloo I feel your post will mislead people if they do not read the article. The author concludes "For most patients with osteoporosis the benefits far exceed the risk of these two rare complications." The article also mentions that cancer patients taking larger doses are more likely to develop osteonecrosis. The risk of atypical fracture is higher after several years of use. Both are rare, as the doctor writes.

My doctor is giving me ONE dose of Reclast (with a trial of 20% usual dose due to sensitivity to meds) to "lock in" gains from Tymlos. There is no plan for long term use.

With my own painful and disabling spinal fractures, I encourage people to understand the risks of side effects versus possible benefits to health in a balanced way that brings health and well-being, whatever that path might be.

I am sorry for those with significant side effects. But fractures are life-changing too.

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