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Support For Those Quitting Prolia
I wanted to start this Discussion as a support thread for those who have already decided to quit Prolia and are in the process of transitioning out of Prolia to share our knowledge, thoughts, decisions and experiences as i had difficulty finding such posts from the various other Prolia threads. Those who have already completed their transition from Prolia are most welcome to contribute their experience.
It would help if you could include some basic info such as TScores, BTMs if available, number of Prolia injections taken, what med you transitioned to, length of time on relay drug and any feedback on effectiveness/reaction to the relay drug.
To prevent overlap with other Discussions already on this forum, the reasons for quitting Prolia need not be raised and it will be assumed that you have already done your research and made your decision. It is hoped that this Discussion will focus more on any feedback/advice that can assist in the transitioning process i.e. not on the 'Why' (quit Prolia) but more on the 'How' (to manage the transition).
Maybe i can start.
Background:
My TScores from my 1st DXA scan in May 2022 were:
Lumbar Spine -1.3
Femoral Neck -2.7
Total Hip -3.0
Unfortunately, my PCP did not order any BTMs so i do not have any baseline numbers.
My 1st Prolia shot was in July 2022, 2nd in Jan 2023 and my 3rd in July 2023.
In Dec 2023 after 18 months on Prolia, i did my 2nd DXA and the results were:
Lumbar Spine -1.1
Femoral Neck -2.6
I decided to quit Prolia before the 4th shot and started on weekly Alendronate in Jan 2024. To date, i have taken 7 Alendronate tablets.
Feedback on Alendronate:
The relay drugs most often cited are Reclast (most frequent) and Alendronate. Alendronate is not recommended for those with esophagus issues as it can irritate and damage the digestive tract.
I decided on Alendronate instead of Reclast as i was wary of taking in a full 1 year's dose of meds in one go and also because i read that the timing of the Reclast infusion can be tricky and the wrong timing may necessitate additional infusions. With Alendronate being a smaller weekly dose, the timing is not really an issue provided there is no delay in starting it at the time the Prolia shot is due.
The 2 days after the first Alendronate tablet and also after the 3rd tablet, i had a bit of stomach pain which went away after i took Veragel. From the 4th week to the 7th week, i have had an achy feeling at the side of my left knee. More surprisingly, i had 3 episodes of tinnitus after my 6th tablet, something which i have not experienced for a long time.
All the above side-effects have been bearable so i will continue with the Alendronate. I pray for the side-effects to cease as i do not want to go on Reclast and i read that Actonel is not potent enough to mitigate the rebound effect.
I plan to do a BTM test in Mar 2024 and quarterly thereafter for the 1st year and a DXA at the end of the 1st year. Depending on the results, i may stop the Alendronate or perhaps go on half-dosage for another 6 months instead of stopping cold turkey. Will also do a BTM at 18 months and a BTM cum DXA at 24 months of Alendronate as the rebound window supposedly stretches over 30 months from the last Prolia shot.
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HugInterested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
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Maybe i can help to clarify.
I was using T0 (time zero) as the date of the last Prolia injection whereas Michael was likely referring to the 1 year period commencing from 6 months after the last shot (i.e. T6-T18).
Using my definition of T0, most of the fractures occur within the period T6-T18 (or 1 year after the effect of the last Prolia shot wears off) but the rebound risk remains from T18 till T30
Thank you for your observation. I guess it is not unexpected that there will be occasional side-tracks in any discussion but i will try to keep the main focus of this thread on the "How" to quit Prolia. I will be doing my BTM tests in a few weeks and will be happy to share the results here
Also, credit to you for being the one to post the very useful transcript of the interview with Dr. McCormick on bone markers which i linked to in one of my earlier posts in this thread! I could not recall who posted it until i saw your name in this thread!
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2 ReactionsSorry 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.
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3 ReactionsHi 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
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1 ReactionHi 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
@michaellavacot many of us would disagree with the chart on your presentation, that suggests medication at quite high DEXA scores. I appreciate that you say you are not a doctor and are sharing your experience.
The presentation you are directing us to has ads. I am concerned that posting that link provides financial benefit. Could you reassure on this?
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2 ReactionsHi windyshores,
Thanks for voicing your concern. I get it. Let me elaborate.
For reference, I'm an engineer used to looking at data. The data I have collected says if you have very low T-scores (-3.5, -4, -5...) you have lost both bone structure and bone mass. You are also at a very high risk of fracture. The osteoanabolics are the only way I have found that help build back some structure with bone density in a short period of time. If you cannot get or do not want an osteoanabolic, then Prolia is the last drug available to reduce your risk of breaks to a more reasonable level. If you see some other path, please share it.
And yes, I'm a male. If I were a female, I would be on estrogen. In a sense, I am on estrogen because I take medication to raise my testosterone that converts to estrogen in the male body and helps build bone. It works for us males. I can share the study if you are interested.
As for the ads on YouTube, that sucks. I ensure you I do not get any revenue for ads on YouTube. I am using it as a platform to host the videos are they are really big. I would gladly post them to any other platform. And so you know, I do not get paid by anyone to do this. I'm just trying to give back to the community that helped me when I started my journey.
Let me know if you have other concerns.
Mike
So Mike are you on Prolia?
I am. I started at the end of November 2023. I was on Evenity then moved immediately to Prolia.
Just to update on my BTM blood test results. The test was done on 2 Mar 2024, 8 months after my 3rd (and last) Prolia injection on 1 July 2023 and 2 months after i started on my weekly Alendronate on 30 Dec 2023:
- CTX 51 pg/mL
- iPTH 3.5 pmol/L
- Calcium 8.3 mg/dL
- Albumin 4.1 g/dL
- Vit D 42.0 ng/mL
As mentioned earlier, i unfortunately, do not have any base numbers to compare with and will have to work with absolute numbers.
On the CTX number, i guess i am relieved that it indicates that Alendronate is effective in preventing any rebound effect but it could also just mean that Prolia is still active. But i don't know if i should be concerned about it being so low i.e. in the high-risk zone for any invasive dental work?
My Calcium is below the recommended range of 8.8 - 10.2 so i will need to increase my calcium supplement from the current 500mg to 700-900 mg.
Vit D is within the acceptable range.
I would welcome and appreciate any insight or comments on the above numbers esp on the low CTX