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Prolia discontinuation

Posted by czauderer @czauderer, Dec 12, 2024

Hi, due to an osteoporosis diagnosis, I took two injections of Prolia six months apart and due two side effects, I want to come off of it. I do not want to transition to a bisphosphonate or remain on one. How do I take myself off of Prolia safely? I am not getting a straight answer from my doctor.

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awesomemomx2 | @awesomemomx2 | Mar 31 5:19pm
In reply to @green1 "@victor5211 do i. I have had 3 injections and my arthritis is so much worse ...." + (show)
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@victor5211 do i. I have had 3 injections and my arthritis is so much worse . I take for my anti estrogen meds astrozole( sp?)
My cancer is estrogen rrlated. Estrogen med above was prescribed after my surgery an radiation. I was told early detection played a big part in early
Lumpectomy. Dr failed to get clear margins within days i has 2nd durgey.
I feel i have been misinformed. Dr suggested i try for two injections at 6 months apart and i could safely stop. A five year maximum would give me time to rid myself of cancer and be cancer free.
Now every thing i read says the longer i take prolia the more risk i have in stopping.
It is time fir the 4th shot snd i am so wishing i had never took the first. I feel tiredand my arthritis is soooo much worse the anti hormone meds make me almost senile but i can endure but griwing fear over having to live on prolia or some other bone meds with so many scary dide effects…what if i have to have emergency surgery with no time to come off prolia?

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@green1 , please look at the thread Quitting Prolia. There is good info there. I am in the process of coming off Prolia 2.5 years - 5 shots. You definitely can not do it without supervision and being on something else. You need to monitor Bone Turnover Markers (BTM). There is a lot to be aware of. Take care. Blessings

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harleysweet64 | @harleysweet64 | Apr 12 7:07pm
In reply to @janetroberson1 "I have been on Prolia for 15 years. The good news is that I went from..." + (show)
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I have been on Prolia for 15 years. The good news is that I went from osteoporosis to osteopenia. The bad news is that I have joint pain which is becoming progressively worse. I'm concerned about discontinuing Prolia. I went off of it for three years. There was no significant change for my forearm, nec, or hip. My spine, however, went from a T score of -2.1 to -2.5. Since resuming Prolia in 2019, the spine T is -1.8. I asked my endocrinologist if Prolia was the best prescription for me and she wouldn't consider other options. I'm going to see a new orthopedic doctor soon and will ask for his opinion. I can't tolerate the joint pain any longer. Has anyone else experienced increasing joint pain with Prolia? With other medications for bone loss?

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@janetroberson1 I had my 1st Prolia shot in June, 2025 and a few days later, I started having severe pain in my thigh/hip area but just assumed it was due to getting ready for a trip the following week. I couldn't even walk without pain or limping. I finally thought of the Prolia shot I had the week before and pulled it up and saw that pain in your thigh was a side effect. I was so mad that my Endocrinologist didn't inform of this. So, I did not receive the 2nd shot in December and transitioned to Alendronate. In the meantime, I ended up going to a new Endocrinologist in January.

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harleysweet64 | @harleysweet64 | Apr 12 7:25pm

@janetroberson1
2nd reply to above post: My new Endocrinologist told me to stop both, Prolia and Alendronate but now I'm scared of rebound since I'm in that timeframe for being off Prolia for 10 months now. I had CTX blood work done last week to access bone turnover rate. I've read that rebound is highest after 2 or more injections, so I'm praying I'll be okay with only having 1 shot. Also, I only have osteopenia but have had it for years and not even sure why my other Endocrinologist started me on Prolia in the first place. I wish you well in your journey. All I can say is, Prolia stinks and should not be prescribed. Take care!

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