Prolia treatment for osteoporosis: What is your experience?

Posted by Veruska @veriska, Mar 7, 2017

I received the results from my bone test and they have recommended I start Prolia. I have read the side effects and I am concerned. Has anyone use this drug and if so what side effects have you experienced. Thank you

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Profile picture for windyshores @windyshores

If you stop Prolia, there is no choice at this point in time, other than Reclast (the strongest) or alendronate. Prolia has a rebound and you can lose bone density and have increased fracture risk very quickly, according to my doctors, Dr. Ben Leder's YouTube video "Combinations and Sequencing", McCormick's book "Great Bones" and many other sources (just citing my favorites). Reclast or alendronate are needed after every other osteoporosis medicine, actually, to "lock in" gains, but it is especially important after Prolia due to the strong rebound. Maybe you could do a bisphosphonate for one year (one Reclast for instance)-????

It may be as simple as one Reclast infusion but I don't know how long you need bisphosphonates to counter the rebound. McCormick and some doctors will use the CRX bone marker test to monitor when the bisphosphonate is needed, exactly (timing of infusion for instance) and also how you are doing with the rebound risk. For instance if you did one Reclast, the CTX could be done to make sure it is working and then the CTX could be done months later, and continue as a monitoring approach evaluating whether more bisphosphonate is needed. But there may be a standard answer to this already. It's just that you might want to do less alendronate or Reclast because of prior use.

I don't know if there is any research into other sequences after Prolia but I have not seen any. Always ask your doctor! Generally bisphosphonates are taken 3-5 years.. Prolia is also an anti-resorptive. So you have only been on anti-resorptive. I think a situation like yours is complex and needs medical advice. Do you have a good endocrinologist?

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I took forteo for two years then alendronate for 5. Now on my 11th shots of evenity and my endocrinologist wants me on prolia. Thanks

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Profile picture for gravity3 @gravity3

Elizabeth, may I ask how old you are. I am 76 a d my endocrinologist wants me to start prolia after I finish Evenity in several months
I have already had alendronate a d forteo
If I start prolia now and want to get off what can I follow it with..

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I am 79 years old and my endocrinologist wants me to continue with Prolia because it is working and not causing me any side effects not even mild bad effects. There is definitely no reason for me to change it at least for the moment since Prolia has been very effective for the time being. A month prior to my scheduled shot she orders blood tests to check the level of my calcium and so far it has been normal.

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Profile picture for gravity3 @gravity3

I took forteo for two years then alendronate for 5. Now on my 11th shots of evenity and my endocrinologist wants me on prolia. Thanks

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@gravity3 depending on your age you could stay on Prolia, as @elizabeth44 is doing. I know folks who are doing Prolia for 10 years.

If you stop after more than a couple of years, Reclast seems to be recommended over alendronate.

So you did Forteo, alendronate, Evenity and now Prolia. I think our doctors are figuring out long term protocols as they go, since some drugs are new and some side effects were not known initially. Good luck

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Profile picture for windyshores @windyshores

@sungal some are staying on Prolia 8-10 years apparently but for those of us in our 70's, that means into our 80's and then stopping and doing Reclast....When I am 80+ I would consider Prolia if it was tolerable and if the effect on immune system is okayed by research and MD's (I have lupus). I have a friend who is 83 and taking it for the rest of her life, apparently. She has not been told about a need to stop or rebound and follow-up and I did not enlighten her 🙂

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Me too. I've taken Prolia 8 yrs at 76 years old. Previous GP said it's up to me if I want to continue but he retired. My new GP wants me to continue. Thankfully no side effects but I'm wandering the precise benefits. In Feb. 2024, I had total hip replacement and now the other hip is starting. As far as I'm concerned I'm disabled. Nothing strenuous to prevent dislocation. Getting old isn't a 'golden age'.

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I experienced sudden and significant hair loss after my third shot.
Also my fingernails have become tissue paper thin.
I am waiting to see a specialist to find out what I should be taking alternatively.
Needless to say, I quit the Prolia shots.

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Profile picture for kfmgm @kfmgm

I experienced sudden and significant hair loss after my third shot.
Also my fingernails have become tissue paper thin.
I am waiting to see a specialist to find out what I should be taking alternatively.
Needless to say, I quit the Prolia shots.

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@kfmgm are you on Reclast or Fosamax to prevent rebound after quitting Prolia?

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Somehow I ended up over 3 weeks past my 6 month time period & I was wondering if itching & rash are sympthoms of a delayed dose. I am miserable & had a bad experience very simular from missing psoriasis treatment for a while although it took months to find out why my skin was like severely sunburned, itchy & peeling. I also had a lot of edema.
Thank you,
Terri

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Profile picture for mabel343 @mabel343

Doctors are universal in denying Prolia side effects. My gastroenterologist told me that he has a number of patients who are on Prolia and experiencing gastrointestinal issues

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I agree - I have just had my first Prolia shot 2 weeks ago and do have side effects
- hoping they disappear. I have numbness in my hands (feels arthritis related) and have been really fatigued - the latter seems better today. I was feeling great before the shot.
Much more research has to be put into this!! Our choices are so frustrating!

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Profile picture for crenhov @crenhov

I was on Bonviva for 2 years and it didn't work. I started Prolia in January. So far the only side effects I notice are the same I had with Bonviva... stiffness in my hips and knees when I sit for a long time or first thing in the morning. I am 53 and have just started testing to see if they can discover a cause for my Osteoporosis.

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I had originally beem prescribed Boniva and another prescription and neither worked. my bone density went from peri-osteoporosis to full-blown osteoporosis.
I have been on Prolia for over 10 years and I’ve never had any issues and my bone density test every two years has shown an increase in bone with no issue. The only thing I’m wondering is how long can you be safely on for Prolia❓ my endocrinologist was never able to tell me anything about that.

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So far I have not had side effects. After five years of Reclast with minimal bone improvement Prolia has gotten me down to Osteopenia. I have been on this drug for four years.

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