1. < Osteoporosis & Bone Health
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Success with Prolia?

Posted by yanice @yanice, Jan 4, 2023

Due to stomach issues, I have been advised to have intravenous injections to treat my osteoporosis. I am leaning towards Prolia. Does anyone have any success stories? It seems all I hear about are the awful side effects.

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windyshores | @windyshores | Jun 1, 2023
In reply to @rjd "What was the treatment for your vertebral fracture? I can see why you were hopeful due..." + (show)
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What was the treatment for your vertebral fracture?

I can see why you were hopeful due to significant spine improvement score. Same Dexa machine? Expect your upcoming Dexa scan might be revealing.

I do not think I would be brave enough to try tennis backboard hitting after a recent fracture like yours, at least not before an upcoming scan. You must be feeling good.

One of my problems with susceptibility to osteo disease is that I am told I make absolutely no estrogen. Not just post-menopausal reduction or the little bit produced in fatty tissue but absolutely None due to being one of the very few, very fortunate ovarian cancer survivors for now over 10 years. Understand that estrogen might be connected to healthy bones but with my cancer history I am told in no uncertain terms that I cannot even consider HRT.

Osteopenia was first noted 4 years after completing my cancer treatment and went on alendronate with increased calcium in large part due to my mother's osteo dx resulting in 2 hip breaks after minor falls at age 73 (my current age.) She never learned to walk again because of dementia/alzeimers.

Did not want to go on osteo meds but I was already doing healthy diet and exercise to make sure my immune system had as much artillery as possible to ward off cancer recurrence. Wish I had known then about trace elements that might have been helpful with osteo.

Sending good juju your way in connection with upcoming scan.

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@rjd I also have experienced spinal fracture (4 from a traumatic fall and L1 and L 5 from a movement similar to yours).

I do NOT do any weight bearing but I walk and do tai chi.

I am almost done Tymlos with 20% gain in my spine. From severe to almost osteopenia. I highly recommend it. Yes it has side effects but fractures are worse!

As many on here know I did Tymlos not Forteo because the dose is adjustable. I started at two out of 8 clicks and moved up (once per week or so) and stayed at 7, sometimes 6, clicks of the pen and still had tremendous gains.

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hsum4 | @hsum4 | Jun 2, 2023
In reply to @debralnidel "My Bone Density has improved while using Prolia for 1 1/2 years however, I have had..." + (show)
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My Bone Density has improved while using Prolia for 1 1/2 years however, I have had issues with a bad UTI, bursitis in both hips and a tendon tear ( not sure if it is related). Most recently I have had low back pain and a popping in the low back. I think I will ask to go back to Reclast. It is concerning that you can not stop Prolia without transitioning to another bone drug due to vertebrae fractures.

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I am on Prolia for about 8 to 9 years now. I have developed a lot of lower back pain as well as pain in the hips and in 1 thigh. I also have osteoarthritis. I'm having trouble sleeping because of all the aches and pains and have to take over-the-counter pain medicine. It is truly a mystery that a drug that is supposed to help you with your bones causes pains and problems.

hsum4

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aliber | @aliber | Jul 22, 2023

Would appreciate any thoughts and experiences of anyone doing the Prolia injections, my Dr. has recommended that I start this treatment.

Thank you,
Alison

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2 replies
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pami | @pami | Jul 23, 2023
In reply to @aliber "Would appreciate any thoughts and experiences of anyone doing the Prolia injections, my Dr. has recommended..." + (show)
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Would appreciate any thoughts and experiences of anyone doing the Prolia injections, my Dr. has recommended that I start this treatment.

Thank you,
Alison

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Alison,
I am on Prolia as are 2 of my close neighbors. None of us have had side effects. I have had the best results. I had -4.1 in my lower lumbar and increased to a 3.6 after 1 year. I am due for my 4th shot in 2 months. My back no longer bothers me where I had a compression fracture. One neighbor has had small gains. The other has not had a Dexa Scan yet. My left neck gained -2.4 to -2.2. My right did not improve. I hope that helps you.

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2 replies
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aliber | @aliber | Jul 24, 2023
In reply to @pami "Alison, I am on Prolia as are 2 of my close neighbors. None of us have..." + (show)
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Alison,
I am on Prolia as are 2 of my close neighbors. None of us have had side effects. I have had the best results. I had -4.1 in my lower lumbar and increased to a 3.6 after 1 year. I am due for my 4th shot in 2 months. My back no longer bothers me where I had a compression fracture. One neighbor has had small gains. The other has not had a Dexa Scan yet. My left neck gained -2.4 to -2.2. My right did not improve. I hope that helps you.

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Thank you @pami, I appreciate your response and it is helpful.

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thehuth6 | @thehuth6 | Jul 24, 2023
In reply to @pami "Alison, I am on Prolia as are 2 of my close neighbors. None of us have..." + (show)
Profile picture for pami @pami

Alison,
I am on Prolia as are 2 of my close neighbors. None of us have had side effects. I have had the best results. I had -4.1 in my lower lumbar and increased to a 3.6 after 1 year. I am due for my 4th shot in 2 months. My back no longer bothers me where I had a compression fracture. One neighbor has had small gains. The other has not had a Dexa Scan yet. My left neck gained -2.4 to -2.2. My right did not improve. I hope that helps you.

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Thank you so much for responding. I get so scared as I read about so many negative side effects. I have had one Prolia injection in April 2023, so far so good. I had just completed 2 years of Forteo daily injections which resulted in some gains. Hoping the Prolia continues to show gains. I am not eligible under our insurance for a DEXA until next November. I don't understand why they will only pay every two years when we are changing medications. I believe two years is a long time to wait to see if a medication is working or not. Wishing you and your neighbors improvement. Have a great day!

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Colleen Young, Connect Director | @colleenyoung | Jul 24, 2023
In reply to @aliber "Would appreciate any thoughts and experiences of anyone doing the Prolia injections, my Dr. has recommended..." + (show)
Profile picture for aliber @aliber

Would appreciate any thoughts and experiences of anyone doing the Prolia injections, my Dr. has recommended that I start this treatment.

Thank you,
Alison

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Alison, you may appreciate these related discussions:
- Success with Prolia?: https://connect.mayoclinic.org/discussion/success-with-prolia/
- About to start Prolia: What's your experience?: https://connect.mayoclinic.org/discussion/prolia-1/

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1 reply
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aliber | @aliber | Jul 24, 2023
In reply to @colleenyoung "Alison, you may appreciate these related discussions: - Success with Prolia?: https://connect.mayoclinic.org/discussion/success-with-prolia/ - About to start..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Alison, you may appreciate these related discussions:
- Success with Prolia?: https://connect.mayoclinic.org/discussion/success-with-prolia/
- About to start Prolia: What's your experience?: https://connect.mayoclinic.org/discussion/prolia-1/

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Thank you for this helpful information! Much appreciated Colleen.

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pami | @pami | Jul 24, 2023
In reply to @thehuth6 "Thank you so much for responding. I get so scared as I read about so many..." + (show)
Profile picture for thehuth6 @thehuth6

Thank you so much for responding. I get so scared as I read about so many negative side effects. I have had one Prolia injection in April 2023, so far so good. I had just completed 2 years of Forteo daily injections which resulted in some gains. Hoping the Prolia continues to show gains. I am not eligible under our insurance for a DEXA until next November. I don't understand why they will only pay every two years when we are changing medications. I believe two years is a long time to wait to see if a medication is working or not. Wishing you and your neighbors improvement. Have a great day!

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Best of luck to you. I am on Medicare and they are paying for a yearly DEXA.

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ymv | @ymv | Jul 25, 2023
In reply to @thehuth6 "Thank you so much for responding. I get so scared as I read about so many..." + (show)
Profile picture for thehuth6 @thehuth6

Thank you so much for responding. I get so scared as I read about so many negative side effects. I have had one Prolia injection in April 2023, so far so good. I had just completed 2 years of Forteo daily injections which resulted in some gains. Hoping the Prolia continues to show gains. I am not eligible under our insurance for a DEXA until next November. I don't understand why they will only pay every two years when we are changing medications. I believe two years is a long time to wait to see if a medication is working or not. Wishing you and your neighbors improvement. Have a great day!

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I have been told that if the Dexa is coded to reflect that it is to determine response to treatment it may be eligible for coverage prior to the 2 year period.

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