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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smtakeya3 | @smtakeya3 | Apr 12, 2023

Prolea has been a God send to me with no side effects.

REPLY
Christine | @thisoldewe | Apr 13, 2023
In reply to @pami "I had my 3rd Prolia shot in March. I get a Dexascan every year since my..." + (show)
@pami

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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Thank you so much for your encouragement .. I get my second shot of Prolia today. So far, no side effects.
Awaiting the booking of my bone density scan.
All the best to you for continued success!

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heusty | @heusty | Apr 13, 2023
In reply to @artscaping "Good evening @leeosteo, It has taken me a while to get back to you. I wanted..." + (show)
@artscaping

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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Just an FYI. I have been on Prolia for 5 years. A few years ago I was about 6 weeks late getting my shot. I ended up with 3 compressions fractures of my spine. I’m still on Prolia with no side effects, except for the fractures. So just be cautious if you need to stop or postpone Prolia.

REPLY
leeosteo | @leeosteo | Apr 13, 2023
In reply to @artscaping "Good evening @leeosteo, It has taken me a while to get back to you. I wanted..." + (show)
@artscaping

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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Hi Chris, thanks for getting back to me. You mention Dr Wermers comments re Prolia and said "please see his list". Where do I see this list?

I am very scared of Prolia given the rebound effect and safely getting off Prolia at appropriate time.

Thanks.

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1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Apr 13, 2023
In reply to @leeosteo "Hi Chris, thanks for getting back to me. You mention Dr Wermers comments re Prolia and..." + (show)
@leeosteo

Hi Chris, thanks for getting back to me. You mention Dr Wermers comments re Prolia and said "please see his list". Where do I see this list?

I am very scared of Prolia given the rebound effect and safely getting off Prolia at appropriate time.

Thanks.

Jump to this post

Hi there @leeosteo, the list is right before Dr. Wermer's name. I will copy it here for you.

'Drug holidays only apply to bisphosphonates (alendronate, ibandronate, risedronate, zoledronic acid) and not other osteoporosis medication classes."

The statement about Prolia is mine and in the next paragraph. In fact, I just read a new post on Connect about fractures after discontinuing that medication. Did you see that one?

I was very scared of Prolia and was worried that it would be the only option for the rest of my life. Dr. Wermers definitely helped me get everything straightened out.

May you be healthy, may you be whole.
Chris

REPLY
leeosteo | @leeosteo | Apr 14, 2023

Hi Chris. Thank you for the clarity. I do understand that Prolia is not a bisphosphonate and that you can't go on drug holiday after Prolia. I'm scared because of the high fracture risk of Prolia when stopping and if you don't transition off Prolia the correct way (within appropriate timing to another osteo med) you may not stem off the rebound effect.

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torontogirl | @torontogirl | Apr 16, 2023

I took 2 shots of Prolia… stopped and so far ok. Side effects for
Me are peeling, irritated lips and possible shoulder pain … lips feel better and seeing if shoulder pain eases

REPLY
leeosteo | @leeosteo | Apr 16, 2023

Hi torontogirl, were you scheduled to stop Prolia after 1 yr (2 shots)? Do you know if Prolia helped you? What osteo med is your dr recommending to maintain your gain? May I ask your T score? Mine is -3.3 for spine, -2/7 femoral neck, -2.2 hip, -2.4 forearm. My dr is recommending Prolia.

REPLY
rjd | @rjd | May 24, 2023
In reply to @artscaping "Good evening @leeosteo, It has taken me a while to get back to you. I wanted..." + (show)
@artscaping

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

Jump to this post

My DEXA scan yesterday in preparation for my third Prolia injection showed amazing results!!!! Great news right?

But what about fracture risk from stopping Prolia after 2 injections. My internist dismissed completely my concern and mentioned insurance would not approve any follow-up treatment based on my new Dx scan. HELP!!!!!!!

The internist says I have minimal fracture risk with my new scores showing -2.2 hip, up from -2.7 in March 2022. My spine was always normal. FRAX calculation supports this.

Before starting Prolia, I had been on alondrodate for almost 6 years and at my very first appointment with this internist, he wanted me off alondrodate immediately because I had been on it 'too long'. Never mentioned anything about a drug holiday. Just wanted me to start Prolia.

What do I do now? I just want to celebrate but all the discussion about stopping Prolia has me concerned.

REPLY
windyshores | @windyshores | May 24, 2023

You should probably see an endocrinologist before stopping Prolia. You can do one infusion of Reclast to lock in gains. But check Dr. McCormick's book "Great Bones" on the timing of the Reclast because if done too early, it won't work and if done too late, it won't help with the possible loss from stopping Prolia. The standard 6 month interval doesn't fit everyone. I have read that even one dose of Prolia should be followed up with Reclast, but check with an endo!

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