Can one stop taking prolia after the first shot?

Posted by imatine @imatine, Mar 6, 2021

Hello everyone, my mom is 84 year old and she got osteoporosis since 8 years. She took prolia last October. She started to feel a lot of pain in her legs now. I am thinking she shouldn't take the 2nd shot but I am afraid of the consequences. Did anyone here stop the prolia at an early stage!? If so what happened? Thank you

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@callalloo

Prolia has barely been around for 10 years and has a track record of having well over a hundred thousand adverse effects from it listed on the FDA's FAERS website in that time. I don't think that there is any period of taking this drug, after which one is not at risk unless one segues to another drug, usually a bisphosphonate, almost immediately upon skipping a scheduled dose of Prolia. At least that's what my, and my friends', doctors have told all of us. There are people who have posted on Mayo connect who had problems going off Prolia after taking it for less than 2 years and who have written about their experience.

Any doctor prescribing Prolia has a moral and ethical obligation to fully inform the patient as to what taking Prolia entails in my opinion. But, since apparently doctors aren't always doing this, it's even more important for each of us to double check everything because failure to do so can leave us vulnerable.

I research all prescribed drugs and protocols before agreeing to them. My doctors are fine with that but it took a while to find excellent doctors whose egos are ruffled by proactive patients.

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Yes, the "ego ruffling" makes the journey so hard. Thanks for the sharing with me. I have to make a decision very soon and I'm finding more peace with attacking this with food and supplements, and weight-bearing exercises.

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@colleen67

Yes, the "ego ruffling" makes the journey so hard. Thanks for the sharing with me. I have to make a decision very soon and I'm finding more peace with attacking this with food and supplements, and weight-bearing exercises.

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Hello @colleen67. I see that two incredibly supportive members have joined you already to share their experiences with you on Prolia.

You may notice that I have moved your post into an existing discussion on stopping Prolia, which you can find here: https://connect.mayoclinic.org/discussion/can-one-stop-taking-prolia-after-the-first-shot/

I did this so that you may connect with additional members such as @fourof5zs and @contentandwell who may also be able to share some additional thoughts with you.

I am curious if you've looked into liquid collagen as an option to perhaps include in your regimen as you go forward?

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@amandajro

Hello @colleen67. I see that two incredibly supportive members have joined you already to share their experiences with you on Prolia.

You may notice that I have moved your post into an existing discussion on stopping Prolia, which you can find here: https://connect.mayoclinic.org/discussion/can-one-stop-taking-prolia-after-the-first-shot/

I did this so that you may connect with additional members such as @fourof5zs and @contentandwell who may also be able to share some additional thoughts with you.

I am curious if you've looked into liquid collagen as an option to perhaps include in your regimen as you go forward?

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I have no knowledge about liquid collagen and it's role with osteoporosis. Do you have any personal experience here?

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@amandajro

Hello @colleen67. I see that two incredibly supportive members have joined you already to share their experiences with you on Prolia.

You may notice that I have moved your post into an existing discussion on stopping Prolia, which you can find here: https://connect.mayoclinic.org/discussion/can-one-stop-taking-prolia-after-the-first-shot/

I did this so that you may connect with additional members such as @fourof5zs and @contentandwell who may also be able to share some additional thoughts with you.

I am curious if you've looked into liquid collagen as an option to perhaps include in your regimen as you go forward?

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@amandajro @colleen67
I actually have no experience with Prolia and no doctor has mentioned it to me. I think there is something about Prolia that would make it not appropriate for me due to other medications I am taking, or perhaps other conditions I have. The only osteoporosis medication I have been on so far is Tymlos. When I am done with that I most likely will go on Reclast.
JK

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My doctor did not believe in all the negative side effects from Prolia and told me my situation was critical (already been on fosmax and boniva for 5+ years and did forteo for 2 years). He did not believe it contributed to hair loss, which I have.
I am going to have my 3rd shot (started a year) ago and am trying to decide whether I should continue with it. I'm worried about compression fractures and lose of mobility. I'm sure my doctor will insist I stay on Prolia. But I'm not sure.
Does anyone have any researched advice or actual experience with this issue?

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@contentandwell

@amandajro @colleen67
I actually have no experience with Prolia and no doctor has mentioned it to me. I think there is something about Prolia that would make it not appropriate for me due to other medications I am taking, or perhaps other conditions I have. The only osteoporosis medication I have been on so far is Tymlos. When I am done with that I most likely will go on Reclast.
JK

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JK I was on Fosamax for years and do not it helped any back then. I have had two infusions of Reclast and no problems at all. I would run up to the office, have my infusion, and go back to work. I was going to have my third but I started to have an implant started. I had to wait 5 months to finish it and then 5 months after to begin again. I would have liked to get all my five years in but things happen and my Endo doc never mentioned Reclast again. Then after all my dental work was done, he put me on Tymlos. I never knew about all these different drugs available and their side effects(WOW). I never had any to deal with.
I have gained a lot of knowledge from all the comments on Mayo Connect. I am grateful for this. Now when I go to my Endo yearly, I will be more prepared to ask questions about what I have learned from everyone. Thanks to you all. KLH

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@jsmigielski

My doctor did not believe in all the negative side effects from Prolia and told me my situation was critical (already been on fosmax and boniva for 5+ years and did forteo for 2 years). He did not believe it contributed to hair loss, which I have.
I am going to have my 3rd shot (started a year) ago and am trying to decide whether I should continue with it. I'm worried about compression fractures and lose of mobility. I'm sure my doctor will insist I stay on Prolia. But I'm not sure.
Does anyone have any researched advice or actual experience with this issue?

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You have legitimate concerns, as does your doctor. The problem is that there are no risk-free or perfect drugs for osteoporosis. I'd get a second opinion because, just maybe, there's a way to create a treatment plan that allows you to mitigate the risks by continuing a plan similar to what you've done already. That is, continue switching drugs to maintain any gains but dodge side effects before they kick in?

I'd also try to find a facility and doctor that use some of the newer technologies that look at a range of markets for bone health and focus solely on bone density as it's not the whole story. And you can do everything you can safely do to protect your bones, including reviewing your diet, adding supplements if there's a shortfall (calcium, vitamin D3, vitamin K2, trace minerals like boron, maybe collagen) and exercise that targets osteoporosis. Teri has posted about the online videos for Dr. Fishman's Yoga for Osteoporosis and others have posted other online sources of great information. So there are steps that you might be able to safely pursue in addition to getting some more answers.

I hope this helps. We're all facing the same limited choices to protect out little skeletal homes.

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@sueinmn

Went off without a plan as far as I could tell. It's very difficult to discern the details in some of these scientific studies with all the jargon & abbreviations used.

Sue

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I know. Reading those studies is not for the faint of heart or the impatient. Or people like me with a flimsy science background but good understanding of statistics. I've had to really dig deep to separate out the statistics for things like PFR is progression free recurrence ( which doesn't even make sense to me), overall survival, cancer free survival, and the difference between endpoints, interim points, and secondary endpoints. And the one thing that studies usually gloss over is QOL which is quality of life. I understand that it's a very subjective statistic to gather, but it is one that most of us wants to have some information about.

One number that I pay a lot of attention to is the dropout rate in any study. Because most participants who sign up for a study are highly motivated and don't drop out capriciously. So when I see a high dropout rate, I look further at a drug or a protocol side effects to try to deduce what triggered the high dropout rate.

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@colleen67

Yes, the "ego ruffling" makes the journey so hard. Thanks for the sharing with me. I have to make a decision very soon and I'm finding more peace with attacking this with food and supplements, and weight-bearing exercises.

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I hope that you explore any and all possibilities for treatment. A lot of us who don't have osteoporosis are also exploring diet and exercise and supplements to help maintain bone density. But my impression, from reading hundreds of comments and numerous studies, is that, if one already has osteoporosis, these steps might not be enough to stop or reverse it. And maybe a drug that can rebuild bone would be warranted. Depending upon the severity, if any, of the bone density. And bone health.

It all seems a delicate balancing act to me but, until science advances and is able to prevent osteoporosis entirely, we have to play it by ear to some extent.

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@callalloo

I hope that you explore any and all possibilities for treatment. A lot of us who don't have osteoporosis are also exploring diet and exercise and supplements to help maintain bone density. But my impression, from reading hundreds of comments and numerous studies, is that, if one already has osteoporosis, these steps might not be enough to stop or reverse it. And maybe a drug that can rebuild bone would be warranted. Depending upon the severity, if any, of the bone density. And bone health.

It all seems a delicate balancing act to me but, until science advances and is able to prevent osteoporosis entirely, we have to play it by ear to some extent.

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Thank you. Balancing for sure! And there's just too many balls in the air. I appreciate your candor here, a lot.

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