1. < Osteoporosis & Bone Health

Struggling with making an osteoporosis treatment decision

Posted by heyhey @heyhey, Dec 15, 2020

I am just struggling to make a decision about my treatment. I had my first bone density test and found I have osteoporosis. I have a couple of -3.2 vertebrae. My hip bones less problematic. I'm 60, active and fit. I've seen an endocrinologist and a rheumatologist who were both highly recommended. Both said "Evenity" before I barely sat down. But there is so little known about Evenity, and nothing known about its long term effectiveness or risk. I've read heart breaking posts from women who were advised to take Prolia with the same assurance and then had multiple debilitating fractures because so little was known/admitted about rebound risk. I am tearful and anxious and sleepless. I've been so healthy my body has carried me through so much life and adventure. I just don't know what to do , whether I'm putting me/my body at risk. Both doctors are paid consultants for Amgen. I feel hopeless and distressed. One of the doctors, although I said I wanted to consider my options, went ahead and got pre authorization for Evenity from my insurance "to show me how easy it would be". I feel cornered. My general doctor also has concerns about me being put on a relatively unknown drug when I haven't tried something like Forteo with a long track record.

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marsha2 | @marsha2 | Dec 18, 2021

I have recently been diagnosed with osteoporosis. I've seen 2 doctors and both recommended Prolia. Anyone have experience with it?

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1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Dec 18, 2021
In reply to @marsha2 "I have recently been diagnosed with osteoporosis. I've seen 2 doctors and both recommended Prolia. Anyone..." + (show)
@marsha2

I have recently been diagnosed with osteoporosis. I've seen 2 doctors and both recommended Prolia. Anyone have experience with it?

Jump to this post

Good afternoon @marsha2, This is a note from a fellow Delawarean. I am no longer there but I have experience with Prolia. I just had my second injection of Prolia after completing 2 years of Tymlod for bone building. Although I am not ready for the tests yet, I can tell you that I have had no side effects at all.

May you have peace and ease.
Chris

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1 reply
marsha2 | @marsha2 | Dec 18, 2021
In reply to @artscaping "Good afternoon @marsha2, This is a note from a fellow Delawarean. I am no longer there..." + (show)
@artscaping

Good afternoon @marsha2, This is a note from a fellow Delawarean. I am no longer there but I have experience with Prolia. I just had my second injection of Prolia after completing 2 years of Tymlod for bone building. Although I am not ready for the tests yet, I can tell you that I have had no side effects at all.

May you have peace and ease.
Chris

Jump to this post

Good to know Chris.

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jbcobb2380 | @jbcobb2380 | Dec 19, 2021

I had terrible hemorrhagic UTIs while on Prolia… 9 in one year with massive bleeding at urination. Since I stopped it, not a single one. Be careful if you are prone to urinary issues.

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windyshores | @windyshores | Dec 19, 2021

My doctor at a major center does not recommend Prolia for me. The problem is the big drop in bone density when you go off. On the other hand after 5+ years, there is more danger of atypical fractures, though lower risk than we are led to think. Some are staying on it for life. I think if you are older, it's fine but if you are on the younger side, worth reconsidering. Just my view after talking with doc.

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1 reply
lbmorgan44 | @lbmorgan44 | Mar 16, 2022

I have been on Evenity for 4 months. I had some muscle aches and pains for the first couple of days after the injection, which happens once a month for 12 months. The last two months I took one Zyrtec an hour prior to the Evenity injection and experienced no side effects.

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jeffsurfsalidita | @jeffsurfsalidita | Mar 17, 2022
In reply to @becsbuddy "@jeffsurfsalidita Wow. You are certainly committed to bettering your health! Osteoporosis is no joke and causes..." + (show)
@becsbuddy

@jeffsurfsalidita Wow. You are certainly committed to bettering your health! Osteoporosis is no joke and causes such frustrations and troubles in our lives. I’m struggling with it now due to having to take prednisone for an autoimmune disease that got me 3.5 years ago. Fosamax didn’t work for me so now I’m going to try Reclast. Sure hope i have your success! Was everyone in your group on Forteo and do as well?

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Thanks. I am committed to bettering my health but really struggling with discomfort following my foot and later prostate surgery at Mayo plus overcompensating my entire body from not being able to walk and using a knee scooter and now walking with a heavy limp. If it wasn`t for my Mindfulness practice meditating using the Calm App that Mayo suggested 1 1/2 years ago; I think I would be strugging much more. Tamara Levitt and Jay Shetty are my favorite to listen to their morning meditations that last from 7-10 minutes each and really nice and calming. Jeff Warren too. It helps me relax each morning as I have my morning tea in the back yard or wherever I am. As far as the Forteo group, I don`t know for sure but believe the group as a whole did much better. I just read a little about Reclast and it sounds promising. I wish you the best.

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hillclan | @hillclan | Mar 18, 2022
In reply to @windyshores "My doctor at a major center does not recommend Prolia for me. The problem is the..." + (show)
@windyshores

My doctor at a major center does not recommend Prolia for me. The problem is the big drop in bone density when you go off. On the other hand after 5+ years, there is more danger of atypical fractures, though lower risk than we are led to think. Some are staying on it for life. I think if you are older, it's fine but if you are on the younger side, worth reconsidering. Just my view after talking with doc.

Jump to this post

Hi, Windyshores. I am leery of taking bisphosphonates, also, because of the reasons you mentioned. Would you feel comfortable sharing what type of regimen you are following for treatment?

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1 reply
windyshores | @windyshores | Mar 18, 2022
In reply to @hillclan "Hi, Windyshores. I am leery of taking bisphosphonates, also, because of the reasons you mentioned. Would..." + (show)
@hillclan

Hi, Windyshores. I am leery of taking bisphosphonates, also, because of the reasons you mentioned. Would you feel comfortable sharing what type of regimen you are following for treatment?

Jump to this post

Hi @hillclan. My doc wants me to do Reclast, possibly 1/4 dose with monitoring. If I don't make enough progress on Tymlos I will ask for more months on that or will ask about going on Evenity.

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1 reply
mpeters | @mpeters | Mar 19, 2022
In reply to @windyshores "Hi @hillclan. My doc wants me to do Reclast, possibly 1/4 dose with monitoring. If I..." + (show)
@windyshores

Hi @hillclan. My doc wants me to do Reclast, possibly 1/4 dose with monitoring. If I don't make enough progress on Tymlos I will ask for more months on that or will ask about going on Evenity.

Jump to this post

I’m taking Reclast, usually once every two years. I have had no side effects and I remain active but careful.

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