1. < Osteoporosis & Bone Health

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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hlp123 | @hlp123 | May 4, 2022

Thank you for your up-date. Yes, definitely, we all want to avoid a broken hip. I am at high risk for fracture without impact for my left hip. I try to walk every day to get my weight bearing exercise and I take Calcium and vitamin D3, but I still worry about my hip. Unfortunately my doctors told me a year ago that Prolia was the best way to protect my hip. We did not anticipate the severe side effects I would experience with Prolia and I certainly did not know that I would experience the difficulty of what to do when I decided to stop taking Prolia. I am continuing to hope that Reclast is the answer for me.
Thank you so much for sharing your journey through this part of our lives !
My best to you !

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2 replies
scpartain | @scpartain | May 4, 2022
In reply to @hlp123 "Thank you for your response ! Continued good luck weighing the alternatives and please share what..." + (show)
@hlp123

Thank you for your response !
Continued good luck weighing the alternatives and please share what you feel will be the safest and most effective treatment. I know that will be very helpful !!
Best to you !!

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Thanks so much!

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callalloo | @callalloo | May 4, 2022
In reply to @hlp123 "Thank you for your up-date. Yes, definitely, we all want to avoid a broken hip. I..." + (show)
@hlp123

Thank you for your up-date. Yes, definitely, we all want to avoid a broken hip. I am at high risk for fracture without impact for my left hip. I try to walk every day to get my weight bearing exercise and I take Calcium and vitamin D3, but I still worry about my hip. Unfortunately my doctors told me a year ago that Prolia was the best way to protect my hip. We did not anticipate the severe side effects I would experience with Prolia and I certainly did not know that I would experience the difficulty of what to do when I decided to stop taking Prolia. I am continuing to hope that Reclast is the answer for me.
Thank you so much for sharing your journey through this part of our lives !
My best to you !

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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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1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | May 5, 2022
In reply to @scpartain "Thanks so much for your kind reply. Reclast was not considered because I had MRONJ with..." + (show)
@scpartain

Thanks so much for your kind reply. Reclast was not considered because I had MRONJ with Prolia and Reclast also can cause that condition. The only drugs that are not associated with MRONJ are Forteo, Tymlos, and ultra low dose estrogen, as far as I know. I will continue to weigh the alternatives and try to find the safest and most effective treatment.

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Good evening @scpartin, I just ran across your recent post about having MRONJ with Polia. I am starting to have jaw pain days and my next injection is in June. I am terribly anxious. Will the MRONJ get worse? How did you treat it? I cannot move to another reabsorption protector because I have the same reaction with any bisphosphonate I had no problem with Tymlos for 2 years. Any advice for me and others who are limited to one choice?

Thank you.
Chris

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2 replies
windyshores | @windyshores | May 5, 2022
In reply to @artscaping "Good evening @scpartin, I just ran across your recent post about having MRONJ with Polia. I..." + (show)
@artscaping

Good evening @scpartin, I just ran across your recent post about having MRONJ with Polia. I am starting to have jaw pain days and my next injection is in June. I am terribly anxious. Will the MRONJ get worse? How did you treat it? I cannot move to another reabsorption protector because I have the same reaction with any bisphosphonate I had no problem with Tymlos for 2 years. Any advice for me and others who are limited to one choice?

Thank you.
Chris

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Chris I believe the two year limit has been lifted for Forteo. Don't know if that might be helpful.

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scpartain | @scpartain | May 5, 2022
In reply to @artscaping "Good evening @scpartin, I just ran across your recent post about having MRONJ with Polia. I..." + (show)
@artscaping

Good evening @scpartin, I just ran across your recent post about having MRONJ with Polia. I am starting to have jaw pain days and my next injection is in June. I am terribly anxious. Will the MRONJ get worse? How did you treat it? I cannot move to another reabsorption protector because I have the same reaction with any bisphosphonate I had no problem with Tymlos for 2 years. Any advice for me and others who are limited to one choice?

Thank you.
Chris

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I'm sorry you're having jaw pain. My advice is to see a dentist or oral surgeon to find out what is causing your pain. MRONJ usually occurs after some type of dental surgery and the main symptom is failure to heal with continued pain and infection. Two months after a Prolia injection, I began experiencing pain and symptoms of infection around dental implants which had been in place for twenty years. After the implants were surgically removed, the site did not heal and I was treated for months with antibiotics and oral rinses. I don't know whether the Prolia caused the implants to fail in the first place, but it definitely led to MRONJ post surgery. I feel very fortunate that my jaw eventually healed. Some people are not as lucky and end up with a chronic problem. I hope this is helpful and that you are able to resolve your pain.

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danboys | @danboys | May 6, 2022
In reply to @hlp123 "My response was to "danboys", who stated that Dr. Adachi stated that side effects to Prolia..." + (show)
@hlp123

My response was to "danboys", who stated that Dr. Adachi stated that side effects to Prolia are rare and can be treated and reversed.
I sure would love to know the details of how to treat and reverse the side effects of Prolia.
If anyone has also been told by their doctor that the side effects can be reversed, please post the information.
Thank you !

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I don't recall saying that. I don't know a Dr. Adachi. I did say that I started Prolia and so far didn't have any side effects. That's all I said. It may have been someone commenting on my post but it wasn't me saying that.

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danboys | @danboys | May 6, 2022
In reply to @windyshores "@danboys I think there is concern that risks of atypical fractures and osteonecrosis of the jaw..." + (show)
@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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Yes I read this article on melioguide. My comments were my feelings on Prolia. Other osteoporosis drugs can do the same. Unfortunately, this is what we face as women who have osteoporosis. Each person must make their own decision along with help from their doctor to make the right choice for them. I had to go by what advice my doctor and endocrinologist said was best for me at this stage of my osteoporosis journey.

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1 reply
windyshores | @windyshores | May 6, 2022
In reply to @danboys "Yes I read this article on melioguide. My comments were my feelings on Prolia. Other osteoporosis..." + (show)
@danboys

Yes I read this article on melioguide. My comments were my feelings on Prolia. Other osteoporosis drugs can do the same. Unfortunately, this is what we face as women who have osteoporosis. Each person must make their own decision along with help from their doctor to make the right choice for them. I had to go by what advice my doctor and endocrinologist said was best for me at this stage of my osteoporosis journey.

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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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2 replies
danboys | @danboys | May 6, 2022
In reply to @windyshores "Personally I am avoiding Prolia based on my doctor's recommendation. But everyone is different. I am..." + (show)
@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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Good luck to you as well.

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