Prolia black box warning?

Posted by cpd54 @cpd54, Feb 21 6:36am

FYI,
https://m.youtube.com/watch?v=sZPSWZocbJw

*Moderator Note*

Dr. Susan Brown is listed as a medical anthropologist and certified Nutritionist. Medical anthropology is the study of how health and illness are shaped, experienced, and understood in the context of cultural, historical, and political forces. Dr. Brown is the author of Better Bones and also a retailer. The boxed warning on Prolia specifically focused on the risk to patients with kidney disease and those on dialysis. 

When making treatment and medication choices, it is highly recommended to speak with an endocrinologist.

Additional reading - https://www.reuters.com/business/healthcare-pharmaceuticals/us-fda-revises-labeling-amgens-drug-treat-bone-loss-2024-01-19/

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Is this in response to a post?

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@gravity3

Is this in response to a post?

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No. Just general info

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Thanks. Wasn't sure.☺️

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Has anyone gone off prolia. I have had 1 shot of prolia and can’t imagine continuing this drug. Fosamax was no better if not worse. At 78 I can’t see spending the rest of my life such misery.

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@cella65

Has anyone gone off prolia. I have had 1 shot of prolia and can’t imagine continuing this drug. Fosamax was no better if not worse. At 78 I can’t see spending the rest of my life such misery.

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I don’t take any osteo drugs but I have heard Dr Keith McCormick say to not stay on Prolia longer than 2 years.

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@cella65

Has anyone gone off prolia. I have had 1 shot of prolia and can’t imagine continuing this drug. Fosamax was no better if not worse. At 78 I can’t see spending the rest of my life such misery.

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If you had only 1 shot of Prolia, you can safely stop without any rebound effect. What issue did you have with Prolia?

I stopped Prolia after 3 shots after doing some belated research and am now on weekly Alendronate to mitigate the dreaded rebound effect which the doctor did not warn me about. I hope to get off Alendronate as soon as possible but this will depend on the BTM results

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@cella65

Has anyone gone off prolia. I have had 1 shot of prolia and can’t imagine continuing this drug. Fosamax was no better if not worse. At 78 I can’t see spending the rest of my life such misery.

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cella, its good you are going off after only one shot. People stop taking Prolia more safely the sooner they stop. You can lose bone rapidly and some experience multiple fractures, even just being late for their injection. You will have to take something, even though you likely don't want to. You might try a bisphosphonate that can be injected for until the effects of prolia are no longer a threat. In your case the misery of Prolia is protecting you.

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@formisc

If you had only 1 shot of Prolia, you can safely stop without any rebound effect. What issue did you have with Prolia?

I stopped Prolia after 3 shots after doing some belated research and am now on weekly Alendronate to mitigate the dreaded rebound effect which the doctor did not warn me about. I hope to get off Alendronate as soon as possible but this will depend on the BTM results

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Thank you so much for posting your story.
I have had 3 shots if Prolia but have realized, that I should have researched more rather than accept my doctors suggestion.
It was my rheumatologist , whom I saw this week that asked me questions about it, when he picked up on my history.
I have been sick with respiratory infections, five actually, since October 2022.
My first shot of Prolia was September 20 22.
I have severe asthma and bronchiactesis, so getting infections is NOT helpful at all in maintaining lung health!
I have been following Connect discussions on Prolia, which prompted my question. Yea, Connect!
My follow-up bone density scan is supposed to be after the 4th shot. So I am not aware of'where I am' in recovery, if any.
My rheumatologist also recommended an endocrinologist.
So I see my GP next month for ' the talk' on getting off of Prolia.
Thank you to all who have participated in this discussion.

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Christine,
Since you started your Prolia in September 2022, that means your 4th shot is due next month. So you are in a critical moment where you need to decide if you are proceeding or transitioning off Prolia. Critical because every additional Prolia shot makes it that much harder and more dangerous to stop. For 2 and prob 3 shots, Alendronate should be effective enough as a relay drug to ease off Prolia but for 4 and above, you will need the more potent Reclast infusion(s). And after 4-5 years, even Reclast is not always effective in mitigating the rebound effect.
If you decide to stop Prolia, you should do BTM tests before starting on your relay drug to monitor the effectiveness of the transition. For Alendronate, i have also come across advice to start on the 5th month after the last Prolia shot instead of waiting till the 6th month - something which makes sense to me as resorption activity ramps up very quickly once the Prolia wears off and it could be advantageous to have Alendronate already activated and on hand.
Oh, Prolia does affect the immune system so it may have a hand in your respiratory infections

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@gently

cella, its good you are going off after only one shot. People stop taking Prolia more safely the sooner they stop. You can lose bone rapidly and some experience multiple fractures, even just being late for their injection. You will have to take something, even though you likely don't want to. You might try a bisphosphonate that can be injected for until the effects of prolia are no longer a threat. In your case the misery of Prolia is protecting you.

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I took alendronate for 5 years prior to evenity. On my 6th shots of evenity. Thoughts about next med after evenity?

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