Is there an alternative path after years on Prolia?

Posted by pnapkori @pnapkori, May 4, 2023

How long can I stay on Prolia? I have osteopenia and slight osteoporosis in my spine, and have been taking it for six years . I also exercise and take calcium, magnesium, d-3, and K-2. My numbers have stabilized but I am unsure if I should be doing something different. I don’t have confidence in my doctor’s knowledge on the subject! Thanks for any advice.

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@gravity3

Would this be the first med you would be on for osteoporosis? If so, what is his rationale dor this rather than a bone builder first?

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I tried bone builder for 2 months and side effects were bad.
So I told my Endo treatment with inj was what I wanted to do. Did my research on current inj and Prolia was my choice. My Endo has treated my hypothyroidism for years which is a challenge so we have a good relationship and he listens when I say something is a problem or not working but I also listen to him and follow his directions. He agreed the oral wasn’t for me and we both choose Prolia and I have had no side effects for 5 years and my DEXA after 2 years moved dramatically to Osteopenia which surprised him. Now it’s time to start transitioning off .

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@elizabeth44

My phone number is 252-377-2427 if you don't mind chatting with me I am really interested in your case because you don't take calcium with prolia and yet the doctors insist that when taking prolia we must take calcium. thank you so much.

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My email is
joannemccurdy1@gmail.com
It might be easier to email me for now I just moved back to Surprise to my sons rental and just getting unpacked and making my rounds of doctor visits.

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@joann1941

My email is
joannemccurdy1@gmail.com
It might be easier to email me for now I just moved back to Surprise to my sons rental and just getting unpacked and making my rounds of doctor visits.

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Thank you, Joanne, I will definitely email you. Thanks for your caring attitude.

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@elizabeth44

Dear Joann, You have been a jewel providing me with all this info. My bone density test dropped to the bottom in one year after taking prolia for two years without calcium. I take VitD3, 4000 units per day but that did not seem to help. I don't know what causes the sudden drop of my DEX. Checked my parathyroid was normal my calcium levels normal so I don't know what to do. I feel lost and afraid to stop the prolia.

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9081316/
This article might help you and feel free to take it to your Endo for help reviewing what yo don’t understand or what stage h you are in.

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9081316/
This article might help make a copy and take to your doctor and ask him to explain what you don’t understand and what stage of Osteoporosis you have.

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@joann1941

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9081316/
This article might help make a copy and take to your doctor and ask him to explain what you don’t understand and what stage of Osteoporosis you have.

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Thank you tons and tons again, Joann. This article is extremely helpful and interesting. I will read it closely with my husband. You have been a blessing to me.

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@joann1941

No I don’t take Calcium because I have had several kidney stones that have had to be removed and my stones are 95% Calcium Oxalate .
Before each Prolia inj I have blood work to determine if my Calcium is in normal range and it must be within 30 days of my inj. Mine has remained normal so it’s never delayed my inj.
About 6 months ago I had growth removed from my lower leg and had to go to the wound center weekly for 4 moths. The wound doctor had me start taking Collogen Peptides to improve healing time, which I did daily. It really helped the healing but I also noticed a big improvement in my dry skin and overall felt better. So I am continuing taking it daily and on my latest labs my calcium levels were higher tha normal range. I only take 1000 units of D3 twice a day and my D levels remain in normal range. I have taken D3 for many,many years.
How long have you been on Prolia and what’s your last DEXA test say?
Do you get couples of your labs and DEXA test.
Have you ever had lumbar x-rays ?
I am 83 and do my own research which sometimes drives my Endocrinologist crazy.
If I can help let me know anytime I live in Surprise AZ close to Phoenix.

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No, my doctor never checked my calcium level but only this year because my DEXA test showed severe osteoporosis. Fortunately, my calcium level showed normal 9.2 with numbers being 8.2-10.2. My parathyroid was borderline 77. Yet, my DEXA is the worse that it has ever been and that confuses me .........i tried to get an appointment with an endocrinologist and the earliest one is in June. I am 79 years old and had a hysterectomy in 1988 due to benign fibroids but have never take any estrogen-progesterone, neither calcium. The only thing I took for the past four years is 4000 iu Vit D3 and my levels are normal (45). I cry every day, I am scared to fall. I never had kidney stones....every year i have an US to check my kidneys. I never had lumbar xrays. I will ask my doctor to do them......he is my family doctor but looks like he knows nothing of all this. He never advised me to see an endocrinologist, he thinks he can do it all.

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@elizabeth44

No, my doctor never checked my calcium level but only this year because my DEXA test showed severe osteoporosis. Fortunately, my calcium level showed normal 9.2 with numbers being 8.2-10.2. My parathyroid was borderline 77. Yet, my DEXA is the worse that it has ever been and that confuses me .........i tried to get an appointment with an endocrinologist and the earliest one is in June. I am 79 years old and had a hysterectomy in 1988 due to benign fibroids but have never take any estrogen-progesterone, neither calcium. The only thing I took for the past four years is 4000 iu Vit D3 and my levels are normal (45). I cry every day, I am scared to fall. I never had kidney stones....every year i have an US to check my kidneys. I never had lumbar xrays. I will ask my doctor to do them......he is my family doctor but looks like he knows nothing of all this. He never advised me to see an endocrinologist, he thinks he can do it all.

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If your doctor routinely gets a comprehensive metabolic panel, calcium is included.

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He does my yearly blood checkup does that include the metabolic panel? Thank you, so much.

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joanne 1941 and elizabeth, I've enjoyed your exchange and think it wonderful that you'll continue to communicate privately. Now that you have each other's numbers press the tree dots at the end of the posts and tap report comment and ask that your reply's be deleted to keep your private email and phone private.
best luck with your bones

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