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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@windyshores

@whiteswan Reclast is an infusion. Evenity is an injection of two shots. Just to clarify for others.

Noone should take me as an example just yet. I do a low dose Reclast because of studies on afib and Reclast (I have afib) and kidney issues (GFR of 36). My doctor came up with the idea, not me. And low doses are taken more frequently, like every 3 months, though CTX testing to see if turnover is suppressed can delay them.

I have been told by MD and infusion nurse that doses of 22 mg (Full dose if 5mg) are not uncommon. I have been getting 1mg over an hours time.

I don't think you can get a dose as low as 0.5mg.

If you already have jaw necrosis (so sorry!), is any amount of Reclast safe? What does your endo say? Can you do Evenity which is a milder anti-resorptive? To help with rebound you might need a full dose of Reclast, who knows, but maybe docs will consider low dose every few months for a year, with monitoring to minimize dosage and frequency, as well as to monitor rebound, due to your jaw situation.

Tymlos would be great but I have read and been told that it is not effective right after Prolia, nor is Forteo. (See "Great Bones" by McCormick or Leder's videos on Youtube).

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Thank you very much Gently and Windyshores.
Windyshores, problem is in my doc. She does not KNOW how to order 1 mg Reclast, Code for 1 mg Reclast is Code J3489: Represents "Injection, zoledronic acid, 1mg , she told me that Medicare does not allow to do Reclast 1 mg 4 times a year. And I told her that on Mayo clinic forum from North , Boston and others patients receive this dose 4 times a year. I could not find anywhere what needs to ad to the code j3489. I will try again to speak with Medicare but last time a woman told me that it is prohibited and she will lose her job if she tells me code. I wanted to write 2.5 mg Reclast, not 0.5 mg, for half of year a dosage will be., to protect me for half of year. And my doc told me that it looks so way that PROLIA again for me only one choice. I am 77, do not think that I could live more that 3-5 years, but I do not want Prolia again. Now I know that if you miss a shot of Prolia -fracture! Life is so unpredictable, I have a lonely sister in another country, she has no anybody, only me. What is in the Future?
And if I can tolerate 2.5 mg Reclast-half of dosage than may be to do next for my own money, but here they told me that I can not pay my own money for Reclast. I do not know-- may be there are lawyers for medical problems? And I do not have problems with jaw, problem is that Prolia does not work after 10 years, doc told me and it was the truth -on my density.
I will study Evenity, because only one month of alendronate helped me to reduce CTX, may be Evenity will help in some way.
Girls, God bless you and grant you good health.
Thanks a lot.

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@whiteswan

Thank you very much Gently and Windyshores.
Windyshores, problem is in my doc. She does not KNOW how to order 1 mg Reclast, Code for 1 mg Reclast is Code J3489: Represents "Injection, zoledronic acid, 1mg , she told me that Medicare does not allow to do Reclast 1 mg 4 times a year. And I told her that on Mayo clinic forum from North , Boston and others patients receive this dose 4 times a year. I could not find anywhere what needs to ad to the code j3489. I will try again to speak with Medicare but last time a woman told me that it is prohibited and she will lose her job if she tells me code. I wanted to write 2.5 mg Reclast, not 0.5 mg, for half of year a dosage will be., to protect me for half of year. And my doc told me that it looks so way that PROLIA again for me only one choice. I am 77, do not think that I could live more that 3-5 years, but I do not want Prolia again. Now I know that if you miss a shot of Prolia -fracture! Life is so unpredictable, I have a lonely sister in another country, she has no anybody, only me. What is in the Future?
And if I can tolerate 2.5 mg Reclast-half of dosage than may be to do next for my own money, but here they told me that I can not pay my own money for Reclast. I do not know-- may be there are lawyers for medical problems? And I do not have problems with jaw, problem is that Prolia does not work after 10 years, doc told me and it was the truth -on my density.
I will study Evenity, because only one month of alendronate helped me to reduce CTX, may be Evenity will help in some way.
Girls, God bless you and grant you good health.
Thanks a lot.

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A 1mg dose is unusual. You might get a 2.5 mg Reclast infusion if your doctor authorizes it as medically necessary. Evenity is an option too, perhaps, but ask your doctor.

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@windyshores

A 1mg dose is unusual. You might get a 2.5 mg Reclast infusion if your doctor authorizes it as medically necessary. Evenity is an option too, perhaps, but ask your doctor.

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My doc told me that 2.5 mg Reclast practically works as 5 mg and I remember I read these words somewhere in some research. Simply I have not good kidneys but not edge of the test, my mother died from kidneys, but I have no many choices. Fractures!
Evenity, how it was with you, injection and 2 shots, shots one after another?

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@gently

The single injection would be with Evenity as one dose is two injections.
I'll mention without trying to convince you that the headaches with Tymlos and Forteo can be avoided. They are caused by vasodilation of the blood vessels. Salt before injecting to constrict the vessels as well as a glass of water to increase the fluid to expansion ratio can alleviate the headache.
You might fare better with Zometa. It is zoledronate like Reclast with different dosing parameters.
There probably isn't a code for lower dosage of Reclast. The endocrinology office has to handle this. I hope your prescriber is flexible.
@windyshores your assistance is requested

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Gently, THANK you, thank you so much. I printed this your post to have it.

My plan now looks so way.
Because Zometa somewhere gives dosage according to kidney's test , 2.5 mg of Reclast must be ok for me. I was sick last Reclast, so I will be patient this time.
So Reclast 2.5 mg , then after half of year (or a little more) Tymlos, I will try an approach of Windyshores, small doses, even half or less is better then nothing as now.
You can not imagine how I thankful to you.
THANKS!

REPLY
@whiteswan

My doc told me that 2.5 mg Reclast practically works as 5 mg and I remember I read these words somewhere in some research. Simply I have not good kidneys but not edge of the test, my mother died from kidneys, but I have no many choices. Fractures!
Evenity, how it was with you, injection and 2 shots, shots one after another?

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Evenity is two shots one right after the other.

If you have kidney disease you should be able to do 2.5mg Reclast or even 1mg. I did a CTX test and it showed that so far the two 1mg in June and Sept. have been working and I haven't had another one yet.

Ben Leder MD on YouTube (MGH) mentioned the possibility that a half dose might be sufficient. I have seen it elsewhere as well.

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@windyshores

Evenity is two shots one right after the other.

If you have kidney disease you should be able to do 2.5mg Reclast or even 1mg. I did a CTX test and it showed that so far the two 1mg in June and Sept. have been working and I haven't had another one yet.

Ben Leder MD on YouTube (MGH) mentioned the possibility that a half dose might be sufficient. I have seen it elsewhere as well.

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Thank you, Windyshores,
please repeat how to order of Reclast, 1 hour, hydrated what else?
And may be you know the difference between two shots of Evenity, why two shots?
I looked but very quickly and did not find an answer.

REPLY
@whiteswan

Gently, THANK you, thank you so much. I printed this your post to have it.

My plan now looks so way.
Because Zometa somewhere gives dosage according to kidney's test , 2.5 mg of Reclast must be ok for me. I was sick last Reclast, so I will be patient this time.
So Reclast 2.5 mg , then after half of year (or a little more) Tymlos, I will try an approach of Windyshores, small doses, even half or less is better then nothing as now.
You can not imagine how I thankful to you.
THANKS!

Jump to this post

whiteswan,
It sounds like a good plan. You may want to have bone markers to see if CTX remains low at the 6 months. I hope it works out. It seems as though your physician wants to figure our a path for you.
There is an endocrinologist that I'm fond of quoting. I requote his remarks here for your Zometa infusion:
"I am an osteoporosis expert, and have treated many patients with IV zoledronic acid. I have also played a key role in the development of Fosamax, oral and IV Boniva, so I know a lot more about bisphosphonates than most physicians. There are 3 things I routinely do when I treat patients with IV zoledronic that not all physicians understand.
First, I order the infusion to dilute the 5 mg of zoledronic acid (which comes in 100 mL of D5W) into 500 mL of NS (normal saline), thereby diluting the drug from 5 mg% to 0.8 mg%. Then I order it to be administrated over 60 minutes, instead of 15 minutes. Giving an N-BP more dilute and more slowly makes it even safety for the kidneys. The 3rd thing I always do is order the infusion nurses to administer 650 mg of acetaminophen to the patient during the infusion, and I tell the patient to take at home the same dose of acetaminophen (two regular strength Tylenols) with dinner and at bedtime the day of the infusion, with all 3 meals and at bedtime the day after the infusion, and a final (7th) dose with breakfast the 2nd morning after the infusion. These 8 doses total of acetaminophen reduce the chance of a symptomatic APR from 20-30% to < 1%.The other thing to consider is that in most patients, a 5 mg infusion of zoledronic acid will control the rate of bone turnover for at least 24 months, so most of my patients do not get annual infusions."

REPLY
@whiteswan

Thank you, Windyshores,
please repeat how to order of Reclast, 1 hour, hydrated what else?
And may be you know the difference between two shots of Evenity, why two shots?
I looked but very quickly and did not find an answer.

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@whiteswan I think there are two shots because the full dose doesn't fit in one syringe! They do it in arms, belly or in my case thighs.

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@gently

@izard1, extreme pain in the groin can signal fracture in the hip. Call your doctor. You might request an MRI. I'd want it with contrast because hairline fractures are difficult to detect. It may not be from Prolia though atypical fractures are a Prolia risk. I don't think you should wait.

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Thank you will see my Dr. the 24th.

REPLY
@gently

whiteswan,
It sounds like a good plan. You may want to have bone markers to see if CTX remains low at the 6 months. I hope it works out. It seems as though your physician wants to figure our a path for you.
There is an endocrinologist that I'm fond of quoting. I requote his remarks here for your Zometa infusion:
"I am an osteoporosis expert, and have treated many patients with IV zoledronic acid. I have also played a key role in the development of Fosamax, oral and IV Boniva, so I know a lot more about bisphosphonates than most physicians. There are 3 things I routinely do when I treat patients with IV zoledronic that not all physicians understand.
First, I order the infusion to dilute the 5 mg of zoledronic acid (which comes in 100 mL of D5W) into 500 mL of NS (normal saline), thereby diluting the drug from 5 mg% to 0.8 mg%. Then I order it to be administrated over 60 minutes, instead of 15 minutes. Giving an N-BP more dilute and more slowly makes it even safety for the kidneys. The 3rd thing I always do is order the infusion nurses to administer 650 mg of acetaminophen to the patient during the infusion, and I tell the patient to take at home the same dose of acetaminophen (two regular strength Tylenols) with dinner and at bedtime the day of the infusion, with all 3 meals and at bedtime the day after the infusion, and a final (7th) dose with breakfast the 2nd morning after the infusion. These 8 doses total of acetaminophen reduce the chance of a symptomatic APR from 20-30% to < 1%.The other thing to consider is that in most patients, a 5 mg infusion of zoledronic acid will control the rate of bone turnover for at least 24 months, so most of my patients do not get annual infusions."

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Gently, I have no words to express my thanks to you, you simply save me.
I printed this post to save it for myself and sent a letter to doc. endo on her portal. Hope for the best. And it looks so way that in any case Reclast another (2.5 or 5 mg) infusion must be, even with horrible side effects it is better than fractures. My husbands is sick but I think not now I need echo test because I put on my back and my thighs one folk medicine from another country only because of pain and this folk medicine gives better numbers on density, but it is local and so density in my case does not give real numbers. I live in Melbourne, it needs to go to Orlando. And it needs to study this echo test to understand it.
Thanks, thanks and again THANKS.

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