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Support For Those Quitting Prolia
Osteoporosis & Bone Health | Last Active: 4 days ago | Replies (153)Comment receiving replies
Sorry Michael. I do not consider this fun....more like crawling over broken glass....Forced to get involved when, based on improved DEXA score after 2 injections, my PCP advised stopping Prolia COLD TURKEY.
Thanx to Connect I knew this was not right..... found an NIH summary on studies about Prolia follow-up that I sent to my doctor who actually read it and put me on Fosomax immediately. That was a year ago in May.
Now the question is how long do I stay on Fosomax. Having no side effects. No biomarkers have ever been taken or discussed. Lots of info provided in this thread and I am grateful.
I appreciate your contribution to this fine thread initiated by formisc who also included of a veritable reference library. Thank you formisc.
Will have to do lots of reading....which is challenging as I am traveling out of the country and finding the internet is at present often iffy.
So when I am connected I will download the studies referenced and review them when I would prefer to consider the use of Islamic architectural elements in the built environment of colonial Spain and to refine my volley so that this 74 year old body can try to stay competitive on a tennis court. That is fun for me.
I am ever so impressed and grateful for those of you who are fascinated by all of this and willing to share and discuss with others.
Replies to "Sorry Michael. I do not consider this fun....more like crawling over broken glass....Forced to get involved..."
Hi rjd,
Great job on catching the treatment after Prolia. It's really tough for doctors to stay up on osteoporosis medications, but that was a pretty big miss by your doctor.
Not knowing more details on your situation, I am going to encourage you to watch just 5 minutes of a presentation I did for the BHOF Bone Buddies support group. https://youtu.be/Z4uXAsnhSaA?si=OOfD-KfdVUCY1Uj-&t=2018 . This was the result of my 18 months of research from top osteoporosis doctors in the industry.
Again, I'm not a doctor, I'm just sharing my experience hoping it will help others.
Good luck and have a great time on your trip!
Mike
Connect
Hi rjd,
Like me, it seems like you do not have the support or benefit of advice from a doctor knowledgeable in safely getting off Prolia. We are forced to seek out information and help from whatever sources we can find and hence my motivation for starting this thread.
Connect has been a godsend for me - i just wished i had discover it earlier before i started on any osteo med.
On your main query, the materials i have read nearly all state that you have to take a potent bisphosphonate (usually Reclast/voledronic acid or Alendronate) for between 1-2 years to mitigate the potential rebound.
As you fortunately did not experience any side-effects from Alendronate, you could just play it safe and continue for another year. Personally, i prefer to stop all osteo meds as soon as possible and my plan is to do full dose Alendronate for 1 year and if necessay, half dose for another 6 months to ease off. This is taking a bit of a risk, notwithstanding studies that show most of the fractures happen within 6 months to 18 months after the last Prolia injection, which i plan to manage through the use of bone turnover markers.
Whether you are on Alendronate for 1 or 2 years, you will need to closely monitor your bone turnover markers throughout the 2 year "risk window" to be alert to any surge in bone resorption which could lead to fractures. This is because Prolia can produce a sheer number of pre-osteoclasts, that doesn't remove bone until they become mature. This can happen very quickly. If you have not done so yet, i would highly encourage you to speak to your doctor about ordering the BTM tests
As we both do not have any baseline BTM numbers to compare with, we will need to rely on reference ranges of healthy women and absolute numbers. I am still looking for more info but from what i have read so far, i think i would be comfortable with a range for CTX of between 200-400 but may get worried if it was say, 800 and higher.
I hope to get off Alendronate as soon as possible but much of this will depend on the BTM results
Best wishes