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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My first shot of PROLEA was on April 4, 2024. I could not have another shot after this because of a wide range severe side effects. Here I am 8 months later with severe Eczema on both legs and other parts of my body. Dermatologist aren’t any help. Thyroid and parathyroid still not back to normal. Any suggestions would be appreciated. Thank you all, Annie

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molly123, at five months the medication would be at half-life and the eczema should be lessening soon.
You've probably tried topical cortisone cream. Some are prescribing low dose 5 day prednisone.
Prolia can cause long term hypoparathyroidism, especially if you have kidney problems.
Are you taking anything to prevent Prolia rebound.

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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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@molly123

My first shot of PROLEA was on April 4, 2024. I could not have another shot after this because of a wide range severe side effects. Here I am 8 months later with severe Eczema on both legs and other parts of my body. Dermatologist aren’t any help. Thyroid and parathyroid still not back to normal. Any suggestions would be appreciated. Thank you all, Annie

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Hi Annie,
Thank U 4 posting. Please explain re: thyroid & parathyroid still not back to normal. Did U have surgery on your thyroid & parathyroid? How do U kno Ur thyroid & parathyroid R not back to normal. Thanks. MJ (female 80 yrs) If U don't mind sharing, pls include UR age. This is important bc I was diagnosed 2 yrs ago w/osteoporsis in 2 places (shoulder due 2 overuse & left leg due to knee in need of surgery).

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@janetroberson1

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 That is amazing that you lost only a small amount of bone density after stopping Prolia. How long had you been on it before you stopped?
Sorry I've not taken Prolia and have not kept up on it's possible side effects like joint pain, so I cannot offer any info on that.

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@awfultruth

@janetroberson1 That is amazing that you lost only a small amount of bone density after stopping Prolia. How long had you been on it before you stopped?
Sorry I've not taken Prolia and have not kept up on it's possible side effects like joint pain, so I cannot offer any info on that.

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I was on it for three years. My gynecologist told me that I needed to take a "holiday" for a while. I went off of it for three years. I went back on in 2019 and got my last shot in December, 2024. I'm very concerned....... It seems the longer one is on this drug, the more problematic the side effects and difficulty stopping it.

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@janetroberson1

I was on it for three years. My gynecologist told me that I needed to take a "holiday" for a while. I went off of it for three years. I went back on in 2019 and got my last shot in December, 2024. I'm very concerned....... It seems the longer one is on this drug, the more problematic the side effects and difficulty stopping it.

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I was in a similar situation on prolia for about 12 years. Due to the concern with rebound effect from totally stopping it the most current recommendations say to either transitions to reclast infusion or fosamax. I can’t speak about the joint discomfort you are having but would seek the recommendations of an endocrinologist who specializes in bone and mineral specialty. Good luck with your journey. You are not alone!!

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@gently

molly123, at five months the medication would be at half-life and the eczema should be lessening soon.
You've probably tried topical cortisone cream. Some are prescribing low dose 5 day prednisone.
Prolia can cause long term hypoparathyroidism, especially if you have kidney problems.
Are you taking anything to prevent Prolia rebound.

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Thank you for your reply. I do appreciate it. I haven’t had any renound. I am working with my endocrinologist for a replacement but very leary of taking any other meds for osteoporosis. I have a comprised immune disease and should have been more diligent, my rheumatologist should have too. After two Covid shots years ago, I was sick for three months. Again thank you

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This is my first comment ever. But here goes..I am 78 and had my first Prolia injection on 12/23/24. At my 2 week follow up visit I mentioned to NP that I was suffering from constipation and stomach pain. She said "its not because of Prolia". I thought it would get better, but upper stomach pain is bad all day and night. Today NP told me to see my Primary Dr or go to Urgent Care. She insisted Prolia was no longer in my system. I am getting really worried about getting another injection in June. Any thoughts about stopping the program before it's too late? Thank you in advance for any advice or thoughts. I have read the posts and it is so easy to get overwhelmed.

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Has any one experince extreme pain in the groin area from Prolia. And what can you do about it. Have lost my balance and can't hardly walk because of it
izard1

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