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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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@awesomemomx2,
Prolia reduces CTX. We don't have your baseline but the numbers can be reduced by 79-84% from baseline. Clearly, Prolia is working.
"It will be common to find BTM values below the premenopausal reference interval in women treated with denosumab for osteoporosis. Is this a concern? We do not know for sure, but no adverse skeletal effects were observed over the first 3 years of the FREEDOM Trial."
https://academic.oup.com/jbmr/article-abstract/26/3/530/7598140? 2010
Below the premenopausal reference interval would be below 40 pg/mL
There is concern that CTX lower than 100 can indicate increased risk of avascular necrosis where the bone loses vascular supply, becomes brittle and can fracture atypically in the femur or the jaw.
I'm glad you had the CTX. If you quit Prolia. CTX will rise rapidly. I wouldn't wait more than a month from the 17th to decide.
From the Freedom trial there is information that Prolia does not interfere with fracture healing.
The x-ray is a good idea. An MRI with contrast would be better, as it is more sensitive to trabecular change.
If any of this is confusing, let me know.
Best
The DEXA improvements were also impressive for awesomemom during Prolia treatment, which presumably showed success with Prolia. So why did she need a CTX test?
I gather your bottom-line is that the CTX score of less than 50 is not too low and therefore not a concern in light of the fact that she is in active treatment with Prolia.
It seems to me the problem is the fracturing and some recognition that awesomemom seems to prefer not to continue with Prolia.
What I do not understand from your posting is recommending she not wait more than a month from the 17th to do what?
A) Continue Prolia? And if so, with what target?
B) Stop Prolia and begin either Fosomax or Reclast to counter presumed rebound?
C) Start a new treatment with perhaps an anabolic to try to build stronger bone, especially if it is shown that fracturing continued while on Prolia?
Although I have never fractured, I gather from monitoring Connect that if one's DEXA score is really low AND there has been a fracture, the recommended protocol is to treat with an anabolic. Is this correct? Or...is an anabolic generally considered a much superior treatment and insurance might be willing to pay for an anabolic when there is evidence of fracture?
Thank you for your insights.
I just watched a Paul Miller video and he does say Prolia can be taken long term, even forever. Depending on monitoring. The risk of atypical fractures with Prolia is much less than with bisphosphonates, he said.
If I were on Prolia I would have contradictory feelings. On the one hand, if Prolia is taken for a year or two, there are gains and the rebound can be addressed with Reclast or even alendronate.
The longer Prolia is taken, the worse the rebound so after 3 years it seems we would be kind of trapped into doing it long term. For some that is an answer though.
For those experiencing side effects, this is all moot.
My docs don't use Prolia unless they have to but various videos do have some things to say about its effectiveness.
Just watched Dr. Ben Leder's video and he favors using Prolia for just 1-2 years, followed by Reclast or Fosamax. After that initial period of use, rebound becomes harder to handle. He does say that ONJ and atypical fractures are a risk with long term use but more so with cancer patients.
He also showed that combining 9 months of Forteo (presumably also Tymlos) with 12 months Prolia has the fastest results with an impressive gain in bone density.
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2 ReactionsI’m really interested in your plan of treatment post Prolia. Have been on Prolia for 41/2 years and just stopped refusing my June injection, so my last inj was mid December of 2023. In August 2022 after 2 years on Prolia my DeXA returned Ostopenia. My DEXA test last week was exactly results Osteopenia not much difference in Dexa numbers but the side effects from Prolia which was very painful pain in hips and low back. Several months ago routine X-Rays showed my hips lowed great and some arthritis of the lower spine which was why I decided against my endocrinologist to stop the Prolia. So this week I begin Fosamax 70 mg. I do have small hiatal hernia and know I need to take it with 6-8 oz of water and to be standing for 30-45 minutes.
Any other advice?
Hi joann,
Thank you for sharing your story. The purpose of this thread is for those of us transitioning from Prolia to share our knowledge and experience to help each other make a successful transition
From material that I have read, once you have taken more than 4 Prolia shots, you usually need a more potent bisphosphonate to stave off the rebound effect. In your case, having been on Prolia for 4.5 years, Fosamax may not be potent enough and Reclast is usually precribed as the follow-on drug. Having said that, i don't think it necessarily means that Fosamax will definitely not be effective. I personally think (i.e. not supported by anything I have read) that it's possible that, for those with low baseline CTX, the rebound might be weaker and Fosamax may prove to be adequate. But it does mean that you need to very carefully and frequently monitor your CTX. From your previous post, I gather that you have never had any CTX done before and you do not have any baseline number. Nevertheless, i think it is still important to monitor your CTX and compare it with the relevant recommended range. A very high CTX number may give an early signal that Fosamax is not effective and that you need to consider Reclast instead
All the best and I hope you will keep us updated on your transitioning progress
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3 ReactionsThanks I appreciate your input. I never had a baseline BTM or CRX.
I am starting Fosamax on Saturday how soon should I have a CRX?
Ideally, you should do a CTX before starting Fosamax to set a base for comparison and to check that Fosamax is working.
The usual advice then is to repeat the CTX every 3 months but i have read of others doing it even more frequently, like every 6 weeks especially in the early stage of the transition. If that seems too onerous, maybe, as a suggestion, the first CTX after starting Fosamax could be earlier, say 2 months and then, depending on the result, you could schedule the next CTX accordingly
What is BTM and CRX
@JGTEETHI have just started Prolia. I need major dental work done. I am anxious about the jaw effect. Please share what you know. Is it very rare? I have a jaw issue from time to time as it is. Thanks