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Can Prolia be safely and reasonably discontinued?

Posted by kdryder @kdryder, Mar 5, 2021

My wife is 85 years old, taking Prolia, and has recently moved to an assisted living facility. It is very difficult for her to travel from the ALF, and she does not wish to do so for any reason. Is there a point at which it is reasonable to discontinue Prolia infusions? (Note: The ALF will not do infusions on site.)

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Profile picture for katjopnw
katjopnw | @katjopnw | 5 days ago
In reply to @sewcouture "Hi, No. I take ergocalciferol and Vitamin D. I am not going on any osteoporosis drugs..." + (show)
Profile picture for sewcouture @sewcouture

Hi, No. I take ergocalciferol and Vitamin D. I am not going on any osteoporosis drugs again. Before Prolia I was on one (can't remember the name) and Boniva. They both made me sick . So now, I feel great and I am staying far away from any of the osteoporosis drugs.

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@sewcouture I am interested but ergocalciferol is usually used for thyroid related inability to absorb calcium. My osteoporosis is due to slowing of development of osteoblasts while osteoclast activity increases ... clearing out bone while new bone development is slowed. I am wondering if you have info sites for furthering understanding of this approach, could you share?

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Maryann | @mkoch | 4 days ago
In reply to @katjopnw "@hlp123 I am in the opposite position...I have been taking teraperatide (fosamax) injections for 18 months...." + (show)
Profile picture for katjopnw @katjopnw

@hlp123 I am in the opposite position...I have been taking teraperatide (fosamax) injections for 18 months. I am faced with having to stop teraperatide in the next 6 months and my doc is saying prolia injections every 6 months. I want off the merry go round! Anybody know what the options for Titrating are? I won't be doing this on my own but with my endocrinologist if I can convince her

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@katjopnw: Teraperatide is forteo, not fosamax. I gave myself daily injections for 2 years, many years ago. It was great, for me. I didn't have any side effects and my bone density increased phenomenally. Afterward, the doctor tried to talk me into Prolia but back then it had not been on the market that long so I declined. Instead I had an estrogen patch, (.025) and every 2 years my dexa scan showed I had maintained the gains I had make with forteo. Then, after 10 years or so, I had DCIS (stage 0 breast cancer) and the oncologist said I had to stop the estrogen patch. Predictably, my next dexa scan showed I had lost bone density. Finally, after my next dexa scan, 4 years later, I followed my endocrinologist's advice and went on Prolia. I have gained a little bit, I am assuming from loading up on calcium and vitamin d, because my understanding is Prolia's main focus isn't really to increase bone density but to slow bone break down.

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kfhoz | @kfhoz | 4 days ago
In reply to @mkoch "@katjopnw: Teraperatide is forteo, not fosamax. I gave myself daily injections for 2 years, many years..." + (show)
Profile picture for Maryann @mkoch

@katjopnw: Teraperatide is forteo, not fosamax. I gave myself daily injections for 2 years, many years ago. It was great, for me. I didn't have any side effects and my bone density increased phenomenally. Afterward, the doctor tried to talk me into Prolia but back then it had not been on the market that long so I declined. Instead I had an estrogen patch, (.025) and every 2 years my dexa scan showed I had maintained the gains I had make with forteo. Then, after 10 years or so, I had DCIS (stage 0 breast cancer) and the oncologist said I had to stop the estrogen patch. Predictably, my next dexa scan showed I had lost bone density. Finally, after my next dexa scan, 4 years later, I followed my endocrinologist's advice and went on Prolia. I have gained a little bit, I am assuming from loading up on calcium and vitamin d, because my understanding is Prolia's main focus isn't really to increase bone density but to slow bone break down.

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@mkoch Tip: to search online you also need the correct spelling which is "teriparatide". Not all information can be found under the brand name Forteo.

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Profile picture for kfhoz
kfhoz | @kfhoz | 4 days ago
In reply to @mkoch "@katjopnw: Teraperatide is forteo, not fosamax. I gave myself daily injections for 2 years, many years..." + (show)
Profile picture for Maryann @mkoch

@katjopnw: Teraperatide is forteo, not fosamax. I gave myself daily injections for 2 years, many years ago. It was great, for me. I didn't have any side effects and my bone density increased phenomenally. Afterward, the doctor tried to talk me into Prolia but back then it had not been on the market that long so I declined. Instead I had an estrogen patch, (.025) and every 2 years my dexa scan showed I had maintained the gains I had make with forteo. Then, after 10 years or so, I had DCIS (stage 0 breast cancer) and the oncologist said I had to stop the estrogen patch. Predictably, my next dexa scan showed I had lost bone density. Finally, after my next dexa scan, 4 years later, I followed my endocrinologist's advice and went on Prolia. I have gained a little bit, I am assuming from loading up on calcium and vitamin d, because my understanding is Prolia's main focus isn't really to increase bone density but to slow bone break down.

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@mkoch That is such helpful information! You are the first person whom I have seen post with "proof" that HRT can help maintain BMD after anabolic drugs.

Thanks so much for posting.

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Profile picture for katjopnw
katjopnw | @katjopnw | 4 days ago
In reply to @mkoch "@katjopnw: Teraperatide is forteo, not fosamax. I gave myself daily injections for 2 years, many years..." + (show)
Profile picture for Maryann @mkoch

@katjopnw: Teraperatide is forteo, not fosamax. I gave myself daily injections for 2 years, many years ago. It was great, for me. I didn't have any side effects and my bone density increased phenomenally. Afterward, the doctor tried to talk me into Prolia but back then it had not been on the market that long so I declined. Instead I had an estrogen patch, (.025) and every 2 years my dexa scan showed I had maintained the gains I had make with forteo. Then, after 10 years or so, I had DCIS (stage 0 breast cancer) and the oncologist said I had to stop the estrogen patch. Predictably, my next dexa scan showed I had lost bone density. Finally, after my next dexa scan, 4 years later, I followed my endocrinologist's advice and went on Prolia. I have gained a little bit, I am assuming from loading up on calcium and vitamin d, because my understanding is Prolia's main focus isn't really to increase bone density but to slow bone break down.

Jump to this post

@mkoch
Thank you for the correction. You are correct fosamax was the pill I was on for two years prior to the daily Forteo injection I am doing now. I already know I can't do the estrogen but appreciate the sharing. I believe Prolia will not be an option for me because I will be living remotely and may not always be able to get to an injection apptmt every 6 mos. I am considering moving back to the fosamax for maintenance because I can get that via mail and missing a day or two won't throw my iconoclasts out of whack, not good but not as bad as missing Prolia date. Really would like to go off it all but after reading peer reviewed research, it appears dropping all of the drugs results in a significantly more negative DEXA after 11-18 mos. I so appreciate all the guidance here It definitely helps to hear first hand experiences

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