1. < Osteoporosis & Bone Health

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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bettersleep68 | @bettersleep68 | Jan 27, 2023
In reply to @pedsnurse61 "Thank you for your response. I decided not to go on Evenity, way too risky. I..." + (show)
@pedsnurse61

Thank you for your response. I decided not to go on Evenity, way too risky. I made an appointment with an Endocrinologist to get her opinion on my situation. Wish me luck.

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Keep us updated..would like to know what your decision will be

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bruceandruth1970 | @bruceandruth1970 | Jan 28, 2023
In reply to @pedsnurse61 "I have read all these comments on Prolia and am confused as ever. My question is..." + (show)
@pedsnurse61

I have read all these comments on Prolia and am confused as ever. My question is most of the posts are from people who have seen Endocrinologists. I have only seen Rheumatologists for my severe Osteoporosis. Am I seeing the wrong specialist? I haven't been to a MD in 6 years for my Osteoporosis and have not had a fracture. My newest Rheumatologist wanted to put me on Evenity which I declined after reading about all the horrible side effects. Now he wants to put me on Prolia which I was on after taking Forteo for 2 years. I had no change in my DEXA scan results with either medication. I would appreciate anyone commenting on my post.
Thank you

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My rheumatologist also wants me on Evenity.

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bruceandruth1970 | @bruceandruth1970 | Jan 28, 2023
In reply to @pedsnurse61 "Thank you for your response. I decided not to go on Evenity, way too risky. I..." + (show)
@pedsnurse61

Thank you for your response. I decided not to go on Evenity, way too risky. I made an appointment with an Endocrinologist to get her opinion on my situation. Wish me luck.

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Please let me know what your doctor says. Mine wants me on Evenity.

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1 reply
windyshores | @windyshores | Jan 28, 2023

You can do Tymlos or Forteo before Evenity but not the other way around, I was told by doc, so maybe ask about those meds instead- if you are reluctant to do Evenity.

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greyfox914 | @greyfox914 | Jan 28, 2023
In reply to @artscaping "Good evening @greyfox914........I answered your question right below this message. I just forgot to add your..." + (show)
@artscaping

Good evening @greyfox914........I answered your question right below this message. I just forgot to add your name. Sorry....let me know if you can't find it or have questions.
Chris

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I have not been able to see your response. Would you mind copying it and pasting in a note to me? Thank you for your kindness.

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milkweed | @milkweed | Apr 6, 2023
In reply to @windyshores "Can you go on Tymlos, Forteo or Evenity? Tymlos and Forteo build bone. Evenity builds bone..." + (show)
@windyshores

Can you go on Tymlos, Forteo or Evenity? Tymlos and Forteo build bone. Evenity builds bone and is an antiresorptive like Prolia and the bisphosphonates. though less antiresorptive than the other two.

The problem with Prolia is what to do after you stop it. You cannot take a break or stop without risking a rapid drop in bone density. This is why my doc is not prescribing it. So what does your doc say you would go on after a few years on Prolia? Or does your doc want you on it forever? Long term use may pose the risks that concern you.

I have read studies that show that the bone building drugs are more effective if you don't take bisphosphonates or Prolia. If your scores are severe, your rate of bone loss is significant or you have fractures, insurance may cover the bone builders. Especially since you have tried alendronate. (I am on Tymlos)

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What side effects have you experienced with Tymlos? I am considering going on Tereparatide if I can get approved. My endocrinologist is concerned bc I have a blood clotting disorder, essential thrombocytosis,. Tereparatide promotes a proliferation of mast cells and ET is a proliferation of platelets. I have a query into my hematologist. It’s compelling bc I’ve had 6 stress fxs in my lower leg in 2 years

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Apr 11, 2023
In reply to @leeosteo "Hi Chris, I was on Alendronate for 4 yrs then took a 2 yr med vacation...." + (show)
@leeosteo

Hi Chris, I was on Alendronate for 4 yrs then took a 2 yr med vacation. My Dec 2022 DXA results show my spine is stable but hip, femoral neck, forearm are now osteoporosis. My doctor told me he's putting me on Prolia. He said it works differently than Alendronate although it's still classified as Bisphosphonate. He said I could take Prolia for as much as 10 yrs, then he would put me back on Alendronate for 1-2yrs when I come off Prolia. Does this sound right to you?

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Good evening @leeosteo, It has taken me a while to get back to you. I wanted my Mayo Endocrinologist to have a chance to clarify the issues of "drug vacations". Here is what he shared with me.

"We will often suggest a drug holiday in lower-risk individuals after 5 years on alendronate or 3 years on Reclast. In high-risk individuals, we use alendronate for up to 10 years and Reclast up to 6 years before a drug holiday. Drug holidays only apply to bisphosphonates (alendronate, ibandronate, risedronate, zoledronic acid) and not other osteoporosis medication classes."
Dr. Robert A. Wermers, M.D.

I was also concerned about your doctor's statement that Prolia, although it works differently than Alendronate, is classified as a Bisphosphonate. Dr. Wermers has indicated that Prolia is not a bisphosphonate. Please see his list. Also, you may recall that coming off of Prolia for a drug holiday is not advised because of the risk of fractures.

I find Dr. Wermers forthright, commendable, and trustworthy.

I also notice that since your introduction to Connect, you have been quite busy and supportive of the Connect mission of sharing knowledge. Thank you for your contributions.

May you have contentment and ease today.
Chris

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3 replies
dianestanley | @dianestanley | Apr 11, 2023
In reply to @bruceandruth1970 "Please let me know what your doctor says. Mine wants me on Evenity." + (show)
@bruceandruth1970

Please let me know what your doctor says. Mine wants me on Evenity.

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bruce and ruth1970 - I am getting ready for my 9th shot of Evenity. I have not had any problems other than getting sleepy about an hour after my shot. I have no complaints. I was told that you could not have any heart issues for this med. I have also had to have an oral surgeon remove an old root canal. I had a hip replacement when I was 55 so I was at risk to keep the old root canal as the crown had broken off.

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1 reply
bruceandruth1970 | @bruceandruth1970 | Apr 11, 2023
In reply to @dianestanley "bruce and ruth1970 - I am getting ready for my 9th shot of Evenity. I have..." + (show)
@dianestanley

bruce and ruth1970 - I am getting ready for my 9th shot of Evenity. I have not had any problems other than getting sleepy about an hour after my shot. I have no complaints. I was told that you could not have any heart issues for this med. I have also had to have an oral surgeon remove an old root canal. I had a hip replacement when I was 55 so I was at risk to keep the old root canal as the crown had broken off.

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Thank you for your reply. I have an appointment with a cardiologist tomorrow.

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pami | @pami | Apr 12, 2023

I had my 3rd Prolia shot in March. I get a Dexascan every year since my osteoporosis is bad. My readings I am telling you are in my spine. I started at a -4.5. I had Reclast for a couple of years and got down to -4.1. After 1 year on Prolia, my spine is -3.6! The only side effect I had was after my third shot and I had some aching in my shoulder blade for about a week. I am not sure I can blame Prolia for that. I have 2 neighbors on Prolia and they claim to have no side effects.

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