Discontinuing Prolia

[Crawdadsing]

even on PROLIA for 5 years and wanted to discontinue. Mr doc said I couldn’t just quit so we agree I would take that current injection then talk about what to do at my next injection. I’m not seeing him now so spoke with the PA at my gynecologist office about research I read. She suggested bone supplements that they carry. When I suggested Fosamax until I was past the time when I made might experience reversal bone loss due to PROLIA she said it wouldn’t be any different than taking the PROLIA., the possible side affects were the same. She did prescribe Fosamax which I asked for but I felt she wasn’t happy about it. It was uncomfortable as I told her about research from Dr. Lamy. What is recommended by others Drs when it comes to this situation?

[Fruitandnutcase]

I’ve never taken Prolia but from what I’ve read on here whatever you do don’t stop Prolia without going straight onto a relay drug - I think that’s usually a bisphosphonate- to protect you.

[Crawdadsing in reply to Fruitandnutcase]

That’s what I’ve heard on here to but she didn’t seem to agree with that however she ordered it anyway. When I asked what her experience was on women discontinuing the PROLIA with a biphosphonate she said there were no problems reported to here. She offered me a bone supplement that they sell in the office. Don’t know if if I should just try that or what. I have a call in to the physcian in Colorado that started me on it. I was living there 5 months out of the year but am not going back. I have a call into him to see what he suggests grrrr!

[foxysharon in reply to Crawdadsing]

A bone supplement will not prevent rebound fractures which can occur when you stop Prolia!!! Fosamax is not the same as Prolia, they work in totally different ways. I don't like the advice your doctor gave! You must take a biphosphonate, such as Fosamax, when you stop Prolia, if you don't you risk fractures.

[msw67]

Please search on other posts about stopping Prolia. I stopped Prolia after 7 shots and started taking Fosomax as a relay drug 6 months after my last shot. My doctor followed bone turnover (CTX). I never fractured but I did lose all my gains in bone density and I did get rebound in the bone turnover markers.

[Arcadia10]

The PA at your gynae's office is poorly informed and telling you to use some random bone supplements that they sell is downright dangerous. There is no guaranteed way to get off Prolia safely, but the two drugs which have been proven most efficacious are weekly Fosamax and the annual IV zoledronate infusion. Both msw67 and foxysharon above have given you good advice - and both have first-hand experience in discontinuing Prolia safely.

My experience of using a relay drug other than Fosamax or zoledronate after stopping Prolia was not a positive one. I was put onto Actonel (risedronate) for some unknown reason by a doctor I no longer see. I now know that I should have gone on to Fosamax instead (I didn't want to risk an IV drug). I fractured both sides of my sacrum (left and right sacral alae) as well as my pelvis after 18 months on Actonel and found out recently that I've also fractured two ribs. These are all Prolia rebound fractures, but fortunately not lumbar or thoracic vertebral fractures. So be warned. You must follow the correct protocol - Prof. Lamy's - and keep your CTx below 400ng/L for at least 24 months. My CTx on Actonel increased steadily to a dangerous level (930ng/L) before I fractured.

I would strongly advise finding another doctor who is up-to-date with the current medical knowledge around discontinuing Prolia. There are so many people on this site and others who have had multiple vertebral rebound fractures by not following Prolia with one of the potent bisphosphonates because of lack of knowledge on the part of their doctors and who are now in wheelchairs or on walkers and in terrible relentless pain. You don't want to mess with this drug and its after-effects.

[Crawdadsing in reply to Arcadia10]

Hi Arcadia 10. I have also been seeing a Dr. in Colorado where I live in the summer, who specializes in “bone health”, and have been in touch with him. I started on PROLIA with him 5 years ago and last saw him in June. I told him I wanted to get off the PROLIA but went ahead and took the injection due at that time (June). I contacted him last week after seeing the PA and telling him what her plan was. He was familiar with Dr. Lamy as well as other research so he will manage my care from Colorado. He is starting me on Fosamax 70 mg and is ordering CTx now and again in April to follow up on my progress. My permanent residence is Texas so I was receiving 1 injection with him in Colorado and one in Texas. I feel much better since speaking with him. We’ve always had a good rapport.

[Arcadia10 in reply to Crawdadsing]

That's really good news! Your doctor in Colorado obviously knows what he is talking about and great that he's familiar with Prof. Lamy's research. Monitoring your CTx frequently is key to discontinuing Prolia safely.

Good luck!

[Hidden in reply to Crawdadsing]

I am glad you coordinated continuity of care with your CO provider. The information you were given from that PA is flat out dangerous. Many types of providers technically “can” treat osteoporosis- but many are not well informed and up to date on the latest treatments, proper workup, risks/benefits & mechanisms of action of various treatments, and how/when to properly transition from one treatment to another.

[FearFracture]

The "doctor" who told you that taking Prolia and Fosamax is the same has no clue what he/she is talking about. Prolia is a RANK ligand (RANKL) inhibitor Fosamax is a bisphosphonate. They are both used to treat osteoporosis but they do NOT work the same.

My 80 y.o. relative recently stopped Prolia after having 4 doses (she took it for 2 years, so 1 dose every 6 months). Per her DEXA scans, her bones did improve. She had her last dose in the fall of 2021 and in March 2022, instead of another infusion she started to take alendronate (a bisphosphonate) to prevent rebound fractures after stopping the Prolia. She as to take the alendronate for approximately 1.25 years and then she will take a osteo-med holiday. Additionally, she will be having another DEXA scan in March 2023.

[FearFracture]

That woman really needs to get educated on the drugs she is prescribing. I'm not a doctor but I have read enough to know that she is wrong. Look up Doctor Janet Ruben endocrinologist med.unc.edu/medicine/direct... , she is an expert on this topic, and then send a link to your doctor--so she doesn't hurt other patients.

Watch these interviews

med.unc.edu/medicine/rubin-...

[NaiIan123]

I have been advised to take Prolia as I have gastro problems and acid reflux and was told it was gentler than zolondronic acid. The endocrinologist has gone to trouble to get the drug for me. I am now unhappy about starting it m after reading your comments . Please clarify more .

[Hidden in reply to NaiIan123]

Have you started Prolia yet? Have you had any prior fractures or are you at very high risk of fracture?

Prolia & bisphosphonates - such as oral alendronate (Fosamax) and IV zoledronic acid (Reclast) - work differently. I also have significant GI issues so when it came time for me to use a bisphosphonate (I’ve already completed 2 years of Tymlos and 1 year of Evenity), zoledronic acid was the necessary choice for me as it bypasses the GI tract. I had zero GI issues with the IV zoledronic acid (except nausea for about 24 hours - but the infusion is just once a year). If you use Prolia, it is a must that you take the injection on time every 6 months - and you will have to take a bisphosphonate if you discontinue at some point because discontinuation of Prolia leads to rapid rebound bone loss and high risk of fractures unless a bisphosphonate is used upon discontinuation.