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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@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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Bone density takes a while to change, and due to different machines, person taking the scan, positioning of the body , etc small changes in a DEXA may not be exactly accurate and many hang their hat on those scores. WHERE AS
What should be done is having BONE MARKERS drawn, (CTX, Possibly P1NP, etc) for example a few months after a new med is introduced to see if it’s actually working , rather than waiting 2 years for your next DEXA. If the med is not working then a change can be made then ….rather than wasting all that precious time till your next DEXA. This information is in DrMcCormack’s “Great Bones” book. Pick one up and read it for yourself. Good luck!!!!

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Thank you for this information, very helpful as I ask questions of my Dr. at my next appointment and before starting the Prolia.

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@pami

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

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I’m on Medicare as well & they will only pay for a dexa every two years no matter how bad my t-scores are. I’m happy that you can get coverage for yearly dexas. I think all us women on this forum who have Osteoporosis should have yearly dexas paid in full.

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@ans

Bone density takes a while to change, and due to different machines, person taking the scan, positioning of the body , etc small changes in a DEXA may not be exactly accurate and many hang their hat on those scores. WHERE AS
What should be done is having BONE MARKERS drawn, (CTX, Possibly P1NP, etc) for example a few months after a new med is introduced to see if it’s actually working , rather than waiting 2 years for your next DEXA. If the med is not working then a change can be made then ….rather than wasting all that precious time till your next DEXA. This information is in DrMcCormack’s “Great Bones” book. Pick one up and read it for yourself. Good luck!!!!

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Dr. McCormack also recommends doing the blood bone marker tests (CTX , P1NP) before you initially start with the medications (i.e. Evenity, Reclast, Prolia) to get a base line. Testing once on these medications are also recommended especially when one is tapering off these medications (Evenity....Prolia) to determine the best time to start the relay medication.

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@shula

Dr. McCormack also recommends doing the blood bone marker tests (CTX , P1NP) before you initially start with the medications (i.e. Evenity, Reclast, Prolia) to get a base line. Testing once on these medications are also recommended especially when one is tapering off these medications (Evenity....Prolia) to determine the best time to start the relay medication.

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Yes, you are right!! That baseline is so important, and when finding the best time to transition to a different medication!!!

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<p>Can anyone tell me why some of us have BAD reactions to injections ?<br />My trouble started when I got PMR 4 days after having a high dose flu shot b/c I was 65 . I was shocked. I took prednisone for 9 months but got PMR again 6 years later . Today I have a -3.8 T score in my lumbar area . My orthopedic wants me to start prolia but I am afraid . I don’t think that the suggested doses are for all . I did not get a covid vaccination because of the same fear . Should I see an endocrinologist to talk about my fears of these high dose injections that cause so many people much pain . Can someone tell me of a good experience that they had with prolia ? I now am nearly 77 but am reasonably active and healthy . Thank you</p>

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@lucychristine46

<p>Can anyone tell me why some of us have BAD reactions to injections ?<br />My trouble started when I got PMR 4 days after having a high dose flu shot b/c I was 65 . I was shocked. I took prednisone for 9 months but got PMR again 6 years later . Today I have a -3.8 T score in my lumbar area . My orthopedic wants me to start prolia but I am afraid . I don’t think that the suggested doses are for all . I did not get a covid vaccination because of the same fear . Should I see an endocrinologist to talk about my fears of these high dose injections that cause so many people much pain . Can someone tell me of a good experience that they had with prolia ? I now am nearly 77 but am reasonably active and healthy . Thank you</p>

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I, too was told to take Prolia and refused after researching the side effects of reported, excruciating pain and problems with the jaw. Not for me. I just inject as much Calcium and 20 other suppliments every morning to keep Osteoperousis at bay.

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@lucychristine46

<p>Can anyone tell me why some of us have BAD reactions to injections ?<br />My trouble started when I got PMR 4 days after having a high dose flu shot b/c I was 65 . I was shocked. I took prednisone for 9 months but got PMR again 6 years later . Today I have a -3.8 T score in my lumbar area . My orthopedic wants me to start prolia but I am afraid . I don’t think that the suggested doses are for all . I did not get a covid vaccination because of the same fear . Should I see an endocrinologist to talk about my fears of these high dose injections that cause so many people much pain . Can someone tell me of a good experience that they had with prolia ? I now am nearly 77 but am reasonably active and healthy . Thank you</p>

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Hello @lucychristine46. You may notice I moved your discussion to the Osteoporosis & Bone Health support group and combined it with the existing discussion titled:

- Success with Prolia?
https://connect.mayoclinic.org/discussion/success-with-prolia

I did this so you could read other members' experiences on Prolia and meet members like @texasmimi, @tconz, and @hsum4.

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@lucychristine46 what is PMR. I seem to react to everything as well. I have autoimmune disorders and kidney disease, not sure if those account for it but my sensitivities date back to treatment for Lyme.

I tried to get on various osteoporosis meds for years and even saw an immunologist to help me. As I have written before on this site, I finally managed Tymlos because the dose is adjustable, and I could start low and move up cautiously. I have now been on it almost two years with wonderful results.

There is discussion on this elsewhere but sequencing is important and it would probably be better (McCormick, Leder MD, my doc) to start with a bone builder (Tymlos, Forteo, Evenity) before an anti-resorptive (bisphosphonates, Prolia) to have the most effective treatment.

Getting off Prolia is tricky. The standard thing is to do Reclast 6 months after your last Prolia but for some that is too early (in which case Reclast won't work) and for some it is too late (in which case bone density drops and fracture risk rises). McCormick discusses this in his book "Great Bones" as others have said. My doc doesn't use Prolia for this reason but McCormick uses the CTX and P1NP blood tests. I get those through my PCP and see McCormick as well as my endocrinologist.

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@olderdiva12345

I, too was told to take Prolia and refused after researching the side effects of reported, excruciating pain and problems with the jaw. Not for me. I just inject as much Calcium and 20 other suppliments every morning to keep Osteoperousis at bay.

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Can you tell me what your T score is or what supplements you take ? Do you have osteoporosis?

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