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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@callalloo

My pet peeve is doctors failing to adequately explain a drug completely to a patient. That should always include known side effects and any other considerations with respect to taking that drug. The doctor should certainly have known 'the issues' with transitioning off of Prolia, they're well-publicized. Oh well.

Just a suggestion. If you're not taking vitamin K (preferably K2 to protect arteries from the calcium you're taking), I hope you look into adding it. According to a neurosurgeon friend who treats patients with vertebral injuries, vitamin K2 has an important role in bone health.

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Thank you for your reply !
I am so very grateful for any information that we can share with each other to help us have the best outcome from this journey, we are on, of trying to strengthen our bones and avoid fractures.
wishing you the best !

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@windyshores

@danboys I think there is concern that risks of atypical fractures and osteonecrosis of the jaw if you use Prolia for years. This is because it suppresses turnover. Apparently it hasn't yet been studied past 10 years but I noted this article did mention taking it "for life."

I really like the info on melioguide.com, run by Margaret Martin, who also provides info on exercises on her site.

https://melioguide.com/osteoporosis-treatment/how-long-can-you-take-prolia/#respond#:~:text=How%20Long%20Can%20You%20Take%20Prolia.%20There%20is,have%20clinical%20studies%20that%20go%20beyond%20ten%20years.

"Key Takeaways on Prolia
Here is an executive summary of the key points made in this Prolia article.
Consult with your physician when and if you should take Prolia injections. Have a conversation with your physician about Prolia. You can use the talking points listed the section below entitled, Prolia and Your Doctor.
A key question patients struggle with is how long can you take Prolia? If you start Prolia injections, you should plan on being on the treatment for life. Discontinuing Prolia usage (without going onto another pharmaceutical to maintain the gains you made) could have serious, irreversible side effects. These side effects include multiple vertebral compression fractures and a lowering of your bone mineral density.
You should work with your physician on an exit plan if you decide to stop using Prolia. Keep in mind that the medical community is still working on the most appropriate and safe way to discontinue Prolia. I discuss these in detail in this article.
If you are at a high risk of osteoporosis fracture and your physician advises Prolia injections, you should consider following her or his advice.
Prolia need not be the treatment of choice if your diagnosis places you in a low or moderate fracture risk category. The right combination of exercise and good nutrition can help you to stay (or move you into) the low risk fracture risk category. With the support of your physician, you should try to delay Prolia injections.
Prolia injection side effects can happen. However, both Dr. Adachi and Amgen state that serious side effects are rare. Dr. Adachi’s experience is that most side effects last a short time (less than 3 months), and many Prolia side effects can be treated and reversed."

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I am still Very interested in finding out how to treat and reverse the side effects of Prolia.
Please, if anyone has any knowledge of how to reverse and treat the severe joint, muscle and bone pain, share this information with me.
Thank you

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@hlp123

I am still Very interested in finding out how to treat and reverse the side effects of Prolia.
Please, if anyone has any knowledge of how to reverse and treat the severe joint, muscle and bone pain, share this information with me.
Thank you

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I always talk to a pharmacist about side effects. They know a lot more than doctors on this topic.

I think perhaps people are beating around the bush- I know I am. The most effective way to treat and reverse side effects from Prolia may be to stop Prolia. I don't think anyone knows the exact cause of the pain, aside from possible growth pain. I am sure that Advil and Tylenol aren't doing it for you and anything stronger is not a good idea long term. Prednisone is bad for bones so out of the question.

I would be curious to see if anyone else has an answer but to me it is clear: switch meds. That is why there has been discussion on that. Hope you feel better!
ps Tymlos and Forteo do not cause atypical fractures or osteonecrosis of the jaw because they do not suppress turnover

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@ritafarmer

I have been taking Prolia for two years, and i have not had anh side effects. Much better than the IV Reclast that i was taking before.

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What did you experience with Reclast?

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My bone density did not increase. No side effects.

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@windyshores

I always talk to a pharmacist about side effects. They know a lot more than doctors on this topic.

I think perhaps people are beating around the bush- I know I am. The most effective way to treat and reverse side effects from Prolia may be to stop Prolia. I don't think anyone knows the exact cause of the pain, aside from possible growth pain. I am sure that Advil and Tylenol aren't doing it for you and anything stronger is not a good idea long term. Prednisone is bad for bones so out of the question.

I would be curious to see if anyone else has an answer but to me it is clear: switch meds. That is why there has been discussion on that. Hope you feel better!
ps Tymlos and Forteo do not cause atypical fractures or osteonecrosis of the jaw because they do not suppress turnover

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I did stop Prolia and received my first infusion of Reclast on March 23rd. I have had some muscle soreness, joint pain and bone pain in my fingers, but so far these side effects are mild compare to what I experienced with my second injection of Prolia. Because I have COPD my doctor said I should get the booster (fourth Vaccine) in June, so that I will have added protection over the Summer. I believe in the vaccines so I want to get it, I am just very worried that I will have the same result when I got the booster after my second Prolia injection. My symptoms were so very severe that I was in severe pain for months. The doctor said the Booster exacerbated the severe side effects I had from the Prolia. Has anyone had the booster after Reclast infusion who was having mild side effects and had positive results? ie. no drastic increase in duration and intensity of pain.
I am wishing all of you good experience with your choice of treatment.
thank you

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@hlp123

I did stop Prolia and received my first infusion of Reclast on March 23rd. I have had some muscle soreness, joint pain and bone pain in my fingers, but so far these side effects are mild compare to what I experienced with my second injection of Prolia. Because I have COPD my doctor said I should get the booster (fourth Vaccine) in June, so that I will have added protection over the Summer. I believe in the vaccines so I want to get it, I am just very worried that I will have the same result when I got the booster after my second Prolia injection. My symptoms were so very severe that I was in severe pain for months. The doctor said the Booster exacerbated the severe side effects I had from the Prolia. Has anyone had the booster after Reclast infusion who was having mild side effects and had positive results? ie. no drastic increase in duration and intensity of pain.
I am wishing all of you good experience with your choice of treatment.
thank you

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I wonder if the effect of the booster while you were on Prolia is related to the fact that Prolia affects a part of the immune system (Rankl). https://www.drugs.com/medical-answers/prolia-weaken-immune-system-3553497/

Reclast does not work with the same mechanism that affects the immune system.

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@windyshores

I wonder if the effect of the booster while you were on Prolia is related to the fact that Prolia affects a part of the immune system (Rankl). https://www.drugs.com/medical-answers/prolia-weaken-immune-system-3553497/

Reclast does not work with the same mechanism that affects the immune system.

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Thank you so much for your response !!
It is indeed a comfort to know that Reclast should not affect my immune system in the same way that Prolia did. Again, even though I asked each of my doctors if there was any caution with getting the Booster while on Prolia (the insert does advise to ask your physician before being vaccinated), every doctor including my oncologist said there is absolutely no problem getting any vaccination while on Prolia. My common sense asks the question then Why? is there a comment to ask your doctor before being vaccinated. I am cautiously hopeful that Reclast will not exacerbate the side effects of the Booster. I had no problem with the first two COVID vaccinations last March ! This was before I started Prolia.
Again !
It really helps to have the input and added information you contribute !
My best to you !

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@windyshores

Personally I am avoiding Prolia based on my doctor's recommendation. But everyone is different. I am doing Tymlos and depending on scans will follow up with either Evenity or a partial dose of Reclast. Good luck!

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Why is your doctor recommending you avoid Prolia?

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@ritafarmer

I did not have any side effects from reclast or prolia, bit my bone density have increased more with prolia.

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I found this post from two years ago. Since you've had a few of the drugs for osteoporosis, if you compare most recent DEXA with one from a few years back, do you have an overall net gain, if I read the posts correctly, you had, at one point in time, a gain from Prolia and none from Reclast? Did you maintain the Prolia gains over time. And, if I may ask, are you on osteoporosis meds currently? I'm not taking any and hope I can avoid them but am considering which one(s) are best if needed at the current time.

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