1. < Osteoporosis & Bone Health

Thoughts on Prolia?

Posted by sheezit @sheezit, Mar 28 10:48am

Diagnosed with Osteoporosis. Drs recommend Prolia. Do not like taking medications especially oral. Last resort would be Prolia as injection. Looking for opinions on this medication. Thank you

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

cmhackett52 | @cmhackett52 | May 27 9:11pm
In reply to @artscaping "Good evening, @sheezit. Welcome to Connect and especially to one of the busiest support groups. Perhaps..." + (show)
@artscaping

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

Jump to this post

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.

REPLY
1 reply
gently | @gently | May 27 9:40pm
In reply to @cmhackett52 "I started on alendronate last summer. I stayed on it for one month but suffered terrible..." + (show)
@cmhackett52

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.

Jump to this post

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.

REPLY
2 replies
cmhackett52 | @cmhackett52 | May 28 2:00pm
In reply to @gently "I consider it wise to avoid Prolia, though I don't think your reaction to alendronate is..." + (show)
@gently

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.

Jump to this post

Thank you!!

REPLY
kfmgm | @kfmgm | May 29 3:50pm
In reply to @mackie42 "I am 81 years old and I had three shots of Prolia before my current doctor..." + (show)
@mackie42

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.

Jump to this post

I am 78.
After 3 shots of Prolia, my hair suddenly fell out by the handful!
About a week after I had the shot, I had a COVID shot. I was concerned, but the pharmacist assured me that wouldn't be a problem.
A few days later, my whole head started to "tingle" then my hair fell out by the handful.
I refused to get another shot, so the doctor had me start Risedronate - a pill taken once a week.
My hair is still falling out and I have other side effects.
I am waiting for a specialist appointment to see if there is another alternative.

REPLY
babbsjoy | @babbsjoy | Jun 7 1:45pm
In reply to @gently "I consider it wise to avoid Prolia, though I don't think your reaction to alendronate is..." + (show)
@gently

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.

Jump to this post

gently, Thank you for all the time you put into discussing things on this site. You, windyshores, and others have done more than you know for me, and I am sure many others.

I am newly diagnosed and will have my second meeting with a bone specialist specializing in osteoporosis, in July at which time they will discuss my treatment options. They have ordered the bone markers, X-rays, parathyroid test, etc that so many have discussed here. So far I have done the X-rays and have no fractures. My dexa was -3.6 spine, and osteopenia everywhere else.

In the meantime, I have had a meeting with the PA of a rheumatologist that my PCP referred me to. Had I not been reading on this site, I might well have jumped into what he was strongly suggesting. He said I would never get approved for Tymlos as first med, even though I have acid reflux issues.(I knew that from reading in this site.) He said I would have to try Fosomax first, and then if I couldn’t tolerate it maybe I could get Tymlos. After that he would put me on Prolia for the rest of my life (I am 62). When I said I would like to think about it and see what this other doc recommends, he told me I had one of the worst cases he had seen in his 20 years of practice, for someone so young and that I’d better hurry up and start taking something quickly and I better not fall. When I asked him about bone markers, etc, he didn’t know what I was talking about. After the meeting I went to my car and cried. Then I remembered all these courageous, independent, well-informed women on this site like you, and I put on my big girl panties and resolved to keep researching and go into my next meeting in July well informed and ready to advocate for myself, while also listening to what I know will be more professional advice than the rheumatology PA! Thank you thank you thank you, and many blessings!

REPLY
View MoreView Less
Please sign in or register to post a reply.