Can Prolia be safely and reasonably discontinued?

Tymlos has not caused much in the way of heart palpitations once I figured out it was best to start at two clicks and move up to 8. For me. I have had almost no heart palpitations on 7 clicks for several months.

The difference, as far as I can tell, between Tymlos/Forteo and Evenity, aside from how they work in the body, is that Evenity suppresses bone turnover as well as growing bone. So if your doc is feeling like you have been on Prolia too long, and you are having fractures, I would think you would want to avoid any meds that suppress bone turnover, and do Tymlos instead, which only grows bones. But I am only being logical and your doctor may know things I don't, like relative effectiveness of each drug after years on Prolia.

Lani Simpson writes books and has a Facebook group. There are also Facebook groups for each med. Keith McCormick wrote a book as well. Lani is considering meds or might have started, and Keith took meds, so although both are kind of in the alternative/natural treatment world, they both recognize the need for meds, so I find them to be balanced.

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I joined this very helpful group because I had such severe side effects from my second injection of Prolia and I was trying to gather all the wisdom that I could to help me decide what to take next to avoid the rebound effects from stopping Prolia. I received my first infusion of Reclast on March 23, 2022. This was the only medication that all of my doctors could agree would be the next best step. I want to thank all of you who gave me such helpful information. I asked my doctor if she would please order the infusion to be given more slowly than the recommended 15 minutes. She agreed and my infusion was for one hour. I also drank 64 ounces the day before, the day of and the day after the infusion. So far I have some joint pain and I have had a few episodes of foot bone pain, but nothing like the severe pain I had with Prolia. I hope that I continue to be free from the severe pain I had with Prolia. I have a bone density scheduled for next month. I am so grateful for your advice and support. I will keep you posted as to my progress. If you are considering Reclast. I strongly recommend you have a slow infusion and drink more water than they recommend.

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Thank you for the info on slow infusion and hydration. Did you take any meds, like tylenol or benadryl? Reclast is in my future, after Tymlos, and my doc also mentioned a partial dose as a possibility, and after one infusion said I could be monitored and take breaks. Good luck and again grateful for the info on effectiveness of those strategies.

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A study (European, I believe) has shown that stopping Prolia likely causes fractures, and it is recommended to stay on the treatment forever. Has anyone any experience with stopping Prolia?

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Welcome, @jennjam. I moved your question asking members if anyone has experience with stopping Prolia to this existing discussion:
- Can Prolia be safely and reasonably discontinued at a certain age?: https://connect.mayoclinic.org/discussion/can-prolia-be-safely-and-reasonably-discontinued-at-a-certain-age/

I did this so you can read previous posts and connect with members like @artscaping @hlp123 @windyshores and others

Jenn, has your doctor suggested stopping Prolia?

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@windyshores, Just reread my post and see the order of my treatment mixed up a little at the end. Sorry, more frazzled as the time nears to make a change.

Here’s my sequence: the first part about Reclast being a nightmare for me is spot on. I was not a candidate for things like Fosamax or Boniva. Reclast was the only option I was given and was never on anything else for osteoporosis. Perhaps because I was teetering from osteopenia to osteoporosis. I wasn’t pushed into taking anything. When the time came I liked Reclast was once a year and didn’t have to add another med to my daily arsenal. But I had a severe reaction from Reclast from the start (within the first few hours) which lasted for months, albeit not as horrible as the first month. The next year I opted out of everything and tried controlling with diet & exercise.

My doc (at the time) provided labs and bone density in his office, so I had a BDS every year. My scores weren’t great and Prolia was recommended. I’ve taken it for 12 years with no side effects and no bone loss or fractures of any kind.

Changed Endo’s while on Prolia and finally found someone I have complete trust in. Last year she (Doc) said with this much time clear it was time to go off Prolia and have one Reclast to seal the gains : - o. !!!

6/5/21 tripped over potting soil into a wood pallet stocked w logs then onto concrete floor. Fractured 6 ribs, 2 were acute, one still not healed to date. 11/30/21 felt big change in pain, x-ray showed another acute fracture. I was sent for DXA & full spine X-rays early March. Doc then said in April I should move to Evenity. After much research (not great on Evenity and black box warning) I stumbled across this group while on Mayo’s website! Yeah—so grateful to everyone here.

Wasn’t happy about Evenity findings but now seeing some positive. I wanted a 2nd consult, she encouraged it. It’s been impossible to find someone reputable that isn’t booked into July. I reached out to a couple docs of mine, so did my own Endo. We each found one—hers, excellent, but retired in Sept., mine excellent booked until June. Hers continues research, lectures, but sponsored for some things by Amgen. They conferred about my case, treatment suggestion: Reclast in April then as numbers go up, Evenity. My other doc called his recommendation, pleaded my case. She agreed to review it by me uploading records to her portal. Called the next day and will see me this Saturday for consult.

In gathering my records I noticed Radiology missed something on the original report. Add in another rib. I’ve now gone from 6 to 8 ribs. Oddly, had dinner with friends this last Friday….the wife was on Tymlos a few yrs ago, said it wasn’t that bad, side effects but could handle them. Proceeds to tell me sometimes she forgot to take it then just stopped by herself. ???

You mentioned heart palpations, may I ask if you’re on any heart meds? I have hypertension bordering on the need for an additional drug to lower those numbers. Can you tell me who Lani Simpson is? I’d like to see that video. Thank you so much for all of the information you share, it truly means a lot to me!

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Dear sewcouture, Yes ! My body is telling me that Prolia is a poison for me but every doctor I have is telling me that if I stop it without replacing it with Reclast that I will get spinal fractures etc. And the side effects of Reclast appear to be as bad as Prolia. I am panicked about what to do. My third injection of Prolia is due March 21st. I hope all goes well with you. I have been taking vitamin D3 and Calcium for years. Bless you

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