1. < Osteoporosis & Bone Health
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Do I need to start Prolia? or can I wait and follow my lab results to

Posted by pauladiamante @pauladiamante, Aug 15 2:59pm

I am 70-year-old female very healthy 108 lbs. agile, & active (I am in wildlife rehab and fairly strenuous physical work 5 days per week). I was diagnosed with hyperparathyroidism 1 1/2 years ago which caused osteoporosis. I had parathyroidectomy (tumors removed) January 2024, followed by Evenity inj for 1 year. My CTX is 285 and DEXA is pending Aug. 22. My Dr. Rx'd Prolia, but why? I don't want to start any new drugs unless I have to! What should I do?

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njx58 | @njx58 | Aug 27 12:46pm
In reply to @pauladiamante "Dear wonderful discussion group participants. I am writing here to give a final result to my..." + (show)
Profile picture for pauladiamante @pauladiamante

Dear wonderful discussion group participants. I am writing here to give a final result to my own question. My DEXA results are back, and my spine is completely out of Osteoporosis, and hips and pelvis are very close! The improvement is absolutely 100% exciting and amazing. I cried with relief.
Also, Thanks to the clues from you all, I found a Physician that has Parathyroid & Bone Disorders as a specialty. She is a couple hours drive from me, but she will see me in early Dec. Until then, I am not starting Prolia and will continue to take my Ca, D3, K2, work out till I'm breathless 3 to 5 days a week in my weight vest .... and live in a sea of grace.
This is a pic of my brother and me after my last Evenity inj earlier this year on a celebratory 3 day section hike of the Appalachian Trail.

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Wow, that is great news! You know what the doctor says: whatever you're doing, keep doing it. 🙂

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Maryann | @mkoch | Aug 28 3:24pm
In reply to @mistymom "My endocrinologists was ordering bone density tests one year when my numbers were -2.1 and -2.2..." + (show)
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My endocrinologists was ordering bone density tests one year when my numbers were -2.1 and -2.2 she recommended Prolia. I took it for several years. In 2022 I had occasional burning and tingling in my toes September of 22 the Burning and tingling got worse after my Prolia shot. In spring of 2024 I asked my PCP if I could quit having the shots due to the fact I thought it made it the neuropathy worse and he approved. We moved out of state in July and I saw an orthopedic for spondolethis this Dr. worked at a top 10 orthopedic facility in the nation and Number 1 in Ohio. She did bone density test and I was -2.1 and referred me to a rheumatologist at the Cleveland Clinic. That Dr. told me I never should have been on Prolia unless my scan was -2.5, but since I had been on it and discontinued it you will lose more bone density. She recommended Reclast Infusion and felt that I have a good possibility I will be in the range of not needing to have anything to take with only 1 treatment. I had the reclast injection in February and I didn’t have any side effects and my Neuropathy did not get any worse.

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Have you had another DEXA scan since your Reclast infusion in February?

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oopsiedaisy | @oopsiedaisy | Aug 28 5:49pm
In reply to @pauladiamante "Dear wonderful discussion group participants. I am writing here to give a final result to my..." + (show)
Profile picture for pauladiamante @pauladiamante

Dear wonderful discussion group participants. I am writing here to give a final result to my own question. My DEXA results are back, and my spine is completely out of Osteoporosis, and hips and pelvis are very close! The improvement is absolutely 100% exciting and amazing. I cried with relief.
Also, Thanks to the clues from you all, I found a Physician that has Parathyroid & Bone Disorders as a specialty. She is a couple hours drive from me, but she will see me in early Dec. Until then, I am not starting Prolia and will continue to take my Ca, D3, K2, work out till I'm breathless 3 to 5 days a week in my weight vest .... and live in a sea of grace.
This is a pic of my brother and me after my last Evenity inj earlier this year on a celebratory 3 day section hike of the Appalachian Trail.

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This is excellent news! I am very happy for you. Thank you for letting us know the outcome. It's great to hear a success story.

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mistymom | @mistymom | Aug 29 6:47am
In reply to @mkoch "Have you had another DEXA scan since your Reclast infusion in February?" + (show)
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Have you had another DEXA scan since your Reclast infusion in February?

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No, my next DEXA scan will be August 2027

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gravity3 | @gravity3 | Aug 29 12:03pm
In reply to @mistymom "No, my next DEXA scan will be August 2027" + (show)
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No, my next DEXA scan will be August 2027

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I have been told that you can purchase an earlier dexa...out of pocket if you dont want to wait.

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mistymom | @mistymom | Aug 30 6:37am

I might just do that cause I really don’t wanna have another recclast injection. It’s not necessary.

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gravity3 | @gravity3 | Aug 30 7:30am

If your doc thinks a case can be made to the insurance company they ight allow an earlier dexa.. never hurts to ask.

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drsuefowler | @drsuefowler | Aug 31 10:19am
In reply to @gravity3 "I have been told that you can purchase an earlier dexa...out of pocket if you dont..." + (show)
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I have been told that you can purchase an earlier dexa...out of pocket if you dont want to wait.

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My insurance, BCBS Medicare Advantage, pays more frequently. Dr has to put medically necessary.

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wews | @wews | Aug 31 11:08am

I would see if you can get a REM scan which measures quality of bones - lifting weights and progressively harder to axial load your bones and work on posture and balance and well as impact exercises like stomping feet or heel dropping. This is the only true long term strategy with out drugs. Also taking calcium and D!

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shelldct1 | @shelldct1 | Sep 5 9:01am
In reply to @pauladiamante "Thanks. So much food for thought!!! I never had a baseline CTX pre evenity. This is..." + (show)
Profile picture for pauladiamante @pauladiamante

Thanks. So much food for thought!!! I never had a baseline CTX pre evenity. This is my 1st one. I completed a year of evenity about 3 months ago.

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It still astounds me that doctors do not do a baseline reading of bone turnover markers (CTX for Bone resorption, P1NP for bone building) before starting any OP medications. How would they know the medication is working? Wait 1-2 years until the next DEXA??. I would recommend asking your doctor to do CTX and P1NP testing every 3-6 months just to check those numbers so you would know the meds are doing what they are supposed to do. Good luck 🍀

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