Thoughts on Prolia?

Good evening, @sheezit. Welcome to Connect and especially to one of the busiest support groups. Perhaps it is because, at some point in our female lives, we all face the somewhat problematic decision of how to protect the foundation for our body: our bones. On the other hand, the bones in our body are likely all different, and they age differently. And then, of course, there is a difference in our life activities and the care we have chosen for those bones. Now, add the knowledge that the medical world has uncovered, and we are left with an extensive choice.....to protect our bones.

My introduction to menopause happened to be when a news release threw our medical providers into a frightening situation that required us to change the way we were attempting to protect our aging bones. I remember stopping my prescribed medication right away and then being left with no menopausal support. That was in 1998, and I did nothing until 2018, when my new PCP recommended a bisphosphonate, Boniva.

For some reason, my jaw muscles complained violently, and I was moved to Tymlos. That was an excellent choice for me. If you have read @windyshores posts, then you know my Tymlos experience. Unfortunately, an endocrinologist insisted that I move on with Prolia. My body, especially my jaw, resisted, and I sought help from the Mayo Clinic. Today, I am in year two with alendronate. My body cannot handle large doses of medication. The once-a-week capsule on Monday morning is perfect, and there have been no side effects. I will find out the results this summer. Stay with us, and you will learn about my results.

By that time, I hope you have made the perfect decision for you and kept us informed about your progress.
We are here for you.

May you be safe, protected and free from inner and outer harm.
Chris

I started on alendronate last summer. I stayed on it for one month but suffered terrible side effects and took myself off of it. Due to back problems, I had not been able to take walks for quite a while. The last two months I have been able to take walks after dinner every night.

Last summer my PCP wanted to start me on Prolia but due to my adverse reaction to alendronate, I really hesitate. Plus, my research on Prolia is scary. So, I don't know what to do.

I am otherwise a very healthy 71-year-old who is not overweight.

I consider it wise to avoid Prolia, though I don't think your reaction to alendronate is an indication that you would have an adverse reaction to Prolia.
You might take a look at Forteo or Tymlos. One nice thing about these medications is that you can quit taking them and they leave your system withing 24 hours. So you don't have lingering adverse events.
The other nice thing is that they build the best bone. Even so, they don't work in every body.
Whatever you decide to take you might ask for bone markers before you start for a baseline and 1 month in with Evenity, 2 months in with Forteo and Tymlos and three months in with Reclast. (Don't even think about Prolia; just thinking about it will give you nightmares.) The markers (P1NP and CTX) will let you know if the medication is working for you so you don't take it for a year and then find out.

I am 81 years old and I had three shots of Prolia before my current doctor gave me the choice of either remaining on Prolia for the rest of my life, or switching to Reclast. She felt now was the perfect time to make the switch since I hadn't been taking Prolia for that long. She said they are switching most of their patients from Prolia to Reclast because of the bone resorption but because of my age, if I chose to remain on Prolia for the rest of my life, I could do so although she recommended I make the switch. I had my first Reclast infusion with no side effects whatsoever. Glad I made the switch.

I consider it wise to avoid Prolia, though I don't think your reaction to alendronate is an indication that you would have an adverse reaction to Prolia.
You might take a look at Forteo or Tymlos. One nice thing about these medications is that you can quit taking them and they leave your system withing 24 hours. So you don't have lingering adverse events.
The other nice thing is that they build the best bone. Even so, they don't work in every body.
Whatever you decide to take you might ask for bone markers before you start for a baseline and 1 month in with Evenity, 2 months in with Forteo and Tymlos and three months in with Reclast. (Don't even think about Prolia; just thinking about it will give you nightmares.) The markers (P1NP and CTX) will let you know if the medication is working for you so you don't take it for a year and then find out.

For others: I cannot handle large doses of medicines that stay in the body, like @artscaping. However I have GERD and cannot take oral alendronate. My doctor is giving me 1 mg Reclast, rather than 5mg, and would even do .5mg, and I can have that every 3 months or every 6 months. I saw another endocrinologist who said "we do that all the time." Studies show that 2.5mg is as effective as 5mg on the usual schedule. My doses will be more frequent, 2-4 times/year. I'll post on how it goes.

It helps to have doctors who will work with you flexibly.

Also, I have been told I can wait 2-3 months after Evenity to start the Reclast. With Tymlos, I was told to take it right up until the first dose of Reclast.

Sorry to be off topic here though I suppose Reclast is relevant to getting off Prolia!

Has anyone experienced elevated liver enzymes with Prolia? I have been on Prolia now for over five years. At the beginning, my enzymes were normal. My doctor did not check them for a couple of years because I don’t use alcohol. All of a sudden we checked them in September last year and they were quite elevated. I have found two studies online that mention Prolia as being suspect in these cases.

Hi @windyshores,

Thank you for your detailed explanation. I have had one dose of Prolia but have asked my doctor to look into alternatives after reading more extensively about prolia. Although my osteoporosis is severe (due to having had hypothyroidism, since resolved), I am willing to take a less effective medication for the osteoporosis if it avoids the potential problems with discontinuation of prolia.

Good evening, @sheezit. Welcome to Connect and especially to one of the busiest support groups. Perhaps it is because, at some point in our female lives, we all face the somewhat problematic decision of how to protect the foundation for our body: our bones. On the other hand, the bones in our body are likely all different, and they age differently. And then, of course, there is a difference in our life activities and the care we have chosen for those bones. Now, add the knowledge that the medical world has uncovered, and we are left with an extensive choice.....to protect our bones.

My introduction to menopause happened to be when a news release threw our medical providers into a frightening situation that required us to change the way we were attempting to protect our aging bones. I remember stopping my prescribed medication right away and then being left with no menopausal support. That was in 1998, and I did nothing until 2018, when my new PCP recommended a bisphosphonate, Boniva.

For some reason, my jaw muscles complained violently, and I was moved to Tymlos. That was an excellent choice for me. If you have read @windyshores posts, then you know my Tymlos experience. Unfortunately, an endocrinologist insisted that I move on with Prolia. My body, especially my jaw, resisted, and I sought help from the Mayo Clinic. Today, I am in year two with alendronate. My body cannot handle large doses of medication. The once-a-week capsule on Monday morning is perfect, and there have been no side effects. I will find out the results this summer. Stay with us, and you will learn about my results.

By that time, I hope you have made the perfect decision for you and kept us informed about your progress.
We are here for you.

May you be safe, protected and free from inner and outer harm.
Chris