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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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@gravity3
great news about increasing density gains.
It is fortunate you are being advised by an endo. My understanding is that there is usually only small rebound after Prolia is taken only once or twice. Is that your understanding.....sounds like you have been this route before?
Couple of questions:
1) I thought Reclast is the trade name for zolendronic acid so unsure what is meant here. Believe Reclast is also administered in infusion center? If the DEXA/CTX monitor shows Prolia rebound of concern, what is next step? Can you take another 1/2 dose of zolendronic acid? If no rebound, can you look forward to a drug holiday?
2) Are you in osteopenia territory? What is the area of most concern....spine or hips? Or equal concern?
I am not a fan of Prolia so my inclination would be to go the zolendronic acid route and then up my game on targeted nutrition and targeted targeted exercise while monitoring for rebound.
Has your endo given you any indication about what an CTX score might look like if rebound becomes a concern? Many of us are interested in that score.....
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1 Reaction@rjd
No indictators from him on ctx yet. He had ctx included in my blood test yesterday.
My spin is looking quite good so I will be paying most attention to the femoral neck. Yes, you are right the zolendronic acid. Yes to taking another 1/2 dose if first one is not handling the rebound. And my endocrinologist did mention that I might be able to have a drug holiday. No, I am still in Osteoporosis low range. Thank you so much for the questions and your thoughts on what you might do. I am leaning toward the zolendronic acid route.
@gravity3
I do like your endocrinologist and would prefer the Zometa over Prolia. Though I have a wary eye for Prolia, here the concern would be atypical femur fracture with the most vulnerable femur.
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2 Reactions@rjd
It is my understanding as well. That is why I decided that I might not wish to continue.
@gently
Thanks so much.
@gently
What is Zometa and why are you using that term rather than Reclast/zolindronic? Is it somehow different? And if so, in what way?
rjd, Zometa and Reclast are both zoledronic acid prepared for infusion. Zometa is marketed primarily to cancer patients who take varying doses, usually lower than 5mg often more than once a year to prevent bone destruction from radiation and to guard against metastasis to the bone. Reclast is marketed to osteoporosis patients at 5mg. it seems to be part of a marketing strategy as there is a confidence that 4mg is as effective as 5mg. Some endocrinologists will order Zometa in a lower dose for their osteoporosis patients.
Sorry for the confusion. I'm not always clear.
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@awesomemomx2 . Thank you . The tooth does need to come out. I am seeing a oral surgeon on the 5th of Dec. I can't get in until then. In his practice he was the only one willing for me to stay on alendronate acid which my endocrinologist recommended for me to do. I agreed this was important due to increase in CTX. In a holding pattern for now. Praying for healing across all areas of health for me and all of you.
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2 Reactions@gently
Perhaps not always clear but always helpful. And thanx for 'splaining.' This is important info about which I never heard.
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