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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windyshores | @windyshores | May 3, 2022
In reply to @scpartain "Now I must decide on an alternate treatment, since my doctor advised against further Prolia treatment..." + (show)
@scpartain

Now I must decide on an alternate treatment, since my doctor advised against further Prolia treatment and I am at high risk for fractures. Forteo or ultra low dose estrogen are the options the doctor offered. I will try to make a decision after speaking to my gynecologist about the estrogen treatment.

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@scpartain did the doc mention Tymlos? Some of us like that because you can start with a lower dose and ramp up.

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1 reply
windyshores | @windyshores | May 3, 2022
In reply to @hlp123 "I am very interested in this last post of yours !!!!! The comment that Dr. Adachi..." + (show)
@hlp123

I am very interested in this last post of yours !!!!!
The comment that Dr. Adachi said " that most side effects from Prolia last a short time (less than 3 months) and can be treated and reversed."
Please, I have been trying to find out how to "treat?" and "reverse?" the side effects from Prolia and have not been able to find any answers. I do not want to continue to take Tylenol 1,000mg every 6 hours or Hydrocodiene just to be able to move around without severe joint, muscle and bone pain. What is treating and reversing these severe side effects ?
I really need to know !!!!!!!
I appreciate any help
Thank you,

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Sorry I don't know anything about treating and reversing these side effects. It seems a lot of people stop, but have to go on something else .

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1 reply
scpartain | @scpartain | May 3, 2022
In reply to @windyshores "@scpartain did the doc mention Tymlos? Some of us like that because you can start with..." + (show)
@windyshores

@scpartain did the doc mention Tymlos? Some of us like that because you can start with a lower dose and ramp up.

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We did not discuss Tymlos. He wanted me to discuss the low dose estrogen with the gynecologist first. I will ask about Tymlos when I see him again.

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aspine | @aspine | May 3, 2022
In reply to @windyshores "My post to @aspine seems to be in the wrong place! Too late to edit! Not..." + (show)
@windyshores

My post to @aspine seems to be in the wrong place! Too late to edit! Not sure how that happened. I replied via an email link.

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Hi! Got your post in my e-mail, but hitting view and reply would not take me back to the site. Not sure what's going on. I did see your recommendation for the McCormick book and will check it out. Thank you. I believe I've seen it mentioned by other people as well. Thank you for your good wishes!
Adrian

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hlp123 | @hlp123 | May 4, 2022
In reply to @windyshores "Sorry I don't know anything about treating and reversing these side effects. It seems a lot..." + (show)
@windyshores

Sorry I don't know anything about treating and reversing these side effects. It seems a lot of people stop, but have to go on something else .

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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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1 reply
hlp123 | @hlp123 | May 4, 2022
In reply to @scpartain "Now I must decide on an alternate treatment, since my doctor advised against further Prolia treatment..." + (show)
@scpartain

Now I must decide on an alternate treatment, since my doctor advised against further Prolia treatment and I am at high risk for fractures. Forteo or ultra low dose estrogen are the options the doctor offered. I will try to make a decision after speaking to my gynecologist about the estrogen treatment.

Jump to this post

I think it is very wise of you to explore every option and to speak with all of your doctors before making a decision. I ended up deciding on Reclast when I decided I would not take Prolia any longer.
Good Luck with making your decision. Honestly, I am so happy for you that you did not get on this Prolia experience where you are taking something you can not stop taking without replacing it with another medication. We are all trying to do what will be the best choice to help us when we are at high risk for fracture. Of course, we do not want to have our bones break. However, I had no idea that I would be in pain all the time and that I was about to start something I could not undo when I started Prolia.
I hope you get help and positive results with whatever you choose.

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2 replies
hlp123 | @hlp123 | May 4, 2022
In reply to @hlp123 "I think it is very wise of you to explore every option and to speak with..." + (show)
@hlp123

I think it is very wise of you to explore every option and to speak with all of your doctors before making a decision. I ended up deciding on Reclast when I decided I would not take Prolia any longer.
Good Luck with making your decision. Honestly, I am so happy for you that you did not get on this Prolia experience where you are taking something you can not stop taking without replacing it with another medication. We are all trying to do what will be the best choice to help us when we are at high risk for fracture. Of course, we do not want to have our bones break. However, I had no idea that I would be in pain all the time and that I was about to start something I could not undo when I started Prolia.
I hope you get help and positive results with whatever you choose.

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My reply to Scpartain. I apologize that I did not notice that you had been on Prolia.
Please keep us posted as to what you decide to do. Did you consider Reclast ? I would be interested in why you decided against it. There is no perfect choice, since they all have their problems, but I am thinking perhaps the ultra low dose of estrogen sounds as though it might be the safest choice.
At the very least, it would not cause joint, muscle and bone pain. I wish my doctors had offered me this option.
Let us know how you are doing.
Wishing you the best !

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1 reply
scpartain | @scpartain | May 4, 2022
In reply to @hlp123 "My reply to Scpartain. I apologize that I did not notice that you had been on..." + (show)
@hlp123

My reply to Scpartain. I apologize that I did not notice that you had been on Prolia.
Please keep us posted as to what you decide to do. Did you consider Reclast ? I would be interested in why you decided against it. There is no perfect choice, since they all have their problems, but I am thinking perhaps the ultra low dose of estrogen sounds as though it might be the safest choice.
At the very least, it would not cause joint, muscle and bone pain. I wish my doctors had offered me this option.
Let us know how you are doing.
Wishing you the best !

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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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2 replies
scpartain | @scpartain | May 4, 2022
In reply to @hlp123 "I think it is very wise of you to explore every option and to speak with..." + (show)
@hlp123

I think it is very wise of you to explore every option and to speak with all of your doctors before making a decision. I ended up deciding on Reclast when I decided I would not take Prolia any longer.
Good Luck with making your decision. Honestly, I am so happy for you that you did not get on this Prolia experience where you are taking something you can not stop taking without replacing it with another medication. We are all trying to do what will be the best choice to help us when we are at high risk for fracture. Of course, we do not want to have our bones break. However, I had no idea that I would be in pain all the time and that I was about to start something I could not undo when I started Prolia.
I hope you get help and positive results with whatever you choose.

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Thanks so much for your insight and kind advice. Reclast also causes MRONJ so that is ruled out since I experienced jaw problems with Prolia. I certainly appreciate your concern and support. I will update on my further treatment and decisions. I know from my mother's experience with a broken hip caused by osteoporosis how important it is to seek medical advice and treatment for this condition.

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hlp123 | @hlp123 | May 4, 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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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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