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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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My CTX is 35. I was interested in your comment about dental work with a CTX that is low. Does that dental vulnerability only happen over time?
I take 800mg calcium and don't eat dairy, and calcium is 10.3. In fact, it has been a little over range for years even when I just have one Tums, which has made me wonder.
What is the reference range for your PTH?
Hope these numbers mean you have avoided rebound! It's been 8 months and you started at the standard 6 months. Keith McCormick tells us to customize this transition but one of my endos told me there are studies saying it makes no difference to do CTX to time the transition.
Hope your doc affirms that you are fine! Sure seems like it!
My statement about low CTX and risk of ONJ from invasive dental work comes from these sources:
https://australianprescriber.tg.org.au/articles/osteoporosis-treatment-and-medication-related-osteonecrosis-of-the-jaws.html
and
https://www.carrollperio.com/dental-implants/ctx-test/
It was suggested to observe a "drug holiday" until CTX rises to at least 150 before embarking on any invasive dental work.
Nevertheless, i should point out that i just came across another study which questions the exact cut-off value if not the link:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459452/
I am quite surprised at your low CTX since i recall you have been on mostly anabolics rather than anti-resorptives. Did the low CTX just come about recently or has it always been this low?
Sorry i left out the reference ranges. Here are my numbers again, with reference ranges from the lab in brackets:
- CTX 51 pg/mL (177-1015)
- iPTH 3.5 pmol/L (1.6-6.9)
- Calcium 8.3 mg/dL (8.8-10.2)
- Albumin 4.1 g/dL (3.5-5.0)
- Vit D 42.0 ng/mL (30.0-99.9)
If your calcium level is a little over the range, you could just reduce your supplement intake to a lower dose, say 500-600mg?
On trying to time the Zol infusion, i think the other endos have a point. It may be ideal to get the perfect timing but even if this does not happen, Zol is a 12m dosage with long-term effect so it should still be able to do its work even with imperfect timing.
Based on the above results, i will continue with the Alendronate and redo blood test in around 2-3 month's time. Apparently, from charts i have seen, the peak for CTX after stopping Prolia happens at around 12 months from the last Prolia shot (or 6 months after stopping) so there is still a need to monitor CTX closely over the next several months. Guess not completely out of the woods yet 🙁
My CTX before Tymlos was 324 but not fasting, which raises it. After 18 months on Tymlos, 165 then 186 last summer, and after one month Evenity 145. I just did it again after 3rd Evenity.
Baseline P1NP was 54, 18 months after Tymlos started it was 40, and after one month of Evenity it was 33 (sorry I had a lapse there and put that as my CTX!). I just did that again mid-month because doc said the last one was at day 30 of Evenity so not at peak action.
I was lazy...loggging in to my portal is a pain! Now I see how low your CTX is! My P1NP is puzzling to me and my docs. It may be that Tymlos stopped working by 18 months, according to docs, so that is reasonable. But after Evenity I expected a higher value.
Anyway... sorry for tangent, just wanted to correct previous post. Your CTX is indeed low and it would seem that is from the alendronate-? You would seem to be avoiding rebound quite strongly!? (I put reference range for CTX for my lab, at the bottom of this) This is good news for others...
ps I am taking a little more calcium with Evenity since it can cause low calcium; Tymlos makes it higher for a short time
148-967 (18-29 y)
150-635 (30-39 y)
131-670 (40-49 y)
183-1060 (50-59 y)
171-970 (60-69 y)
152-858 (>70 y)
136-689 (Premenopausal)
177-1015 (Postmenopausal)
Flagging is based on the
age-specific reference
interval and not menopausal
status.
Yes, it's hard to make sense of all these bone turnover markers. My low CTX could be due to the Alendronate or it could mean that the anti-resorptive effects of Prolia have not worn off completely yet. I hope it's the former.
I am still trying to find out the ramifications of such a low CTX. For one thing, i would be very wary about doing any invasive dental work. OTOH, it could mean that i have some leeway to reduce my Alendronate dosage although i probably won't do this until the 2nd year of transtion.
It would be helpful if anyone who has completed or is currently transitioning from Prolia could post their BTM numbers for comparison.
What I have read I would be concerned about having any invasive dental work done with that low of CTX. Needs to be >150 .
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1 ReactionHi windy, I know that you are planning reduced dosage of reclast after evenity. Have you and your doc ever discussed iv ibandronate? I'm curious about its usage.
@mayblin no we haven't discussed ibandronate (Boniva). McCormick said in "Great Bones" pg. 540 that it has the worst side effects.
My doc wants me to do a reduced test dose. Then I can talk to him about the next dose, given in 3 months. This is because of other health conditions I have.
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2 ReactionsHey Formisc,
I believe your transition from Prolia to alendronate had perfect timing and will hopefully allow you to avoid any type of rebound. Might be a good idea to check your calcium in the next 30-60 days just to be sure CTX stay low but you're probably good. Many people that transition like you did after just 18 months will continue to gain bone mass on alendronate after Prolia. You might also have a low CTX baseline, which again, helps with the transition. I would not worry about the low CTX markers. Low is good and it will continue to be suppressed on alendronate. For reference, my CTX after one month on Prolia was 37pg/mL. It will be higher by month 6 before my next shot.
Not sure what to tell you on dental surgery other than tell your surgeon that you are on alendronate so they can get the job done quickly to minimize risk. Exposed bone seems to be what you want to avoid.
So the low calcium needs to be addressed. I to saw my calcium drop when I started Prolia and have bumped up my intake. I have hypercalciuria as well which means I have to take even more than the average just to have a chance at building bone. Low calcium can cause all kinds of side effects so you need to make sure you're getting enough in your diet + supplements. Prolia and alendronate will make it more difficult for your body to borrow calcium from your bone bank (so to speak). You REALLY want to get close to the 1200mg/day range to ensure you have enough calcium to support your bodies set point as well as to have enough for your bones to build. You can't build bone without calcium.
25(OH)D looks perfect. To low or too high is not good for bones. I'm a bit surprised your PTH is only at 3.5 pmol/L (33pg/mL). PTH will typically go high when serum calcium is low. I would have expected numbers closer to 60-70pg/mL. I can't explain that one. Maybe my conversion is off.
Albumin looks great too. No calcium correction required.
My two cents.
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2 ReactionsHi Michael, could you explain calcium correction based on albumin? In what situation should it be done? Thanks
Hi Mayblin,
Sure. A little background first. The form of calcium in your body that is considered physiologically active is called calcium ion or free calcium (Ca2+). When you read the "calcium" on your blood test, it's total calcium. Total calcium is roughly 45% calcium ion, 45% calcium bound to albumin, and 10% other calcium compounds (like calcium phosphate, calcium sulfate...).
Since measuring calcium ion is a bit tricky and more expensive, most doctors just use total calcium and assume the percentages listed above. When you use total calcium, you should adjust the number based on the blood albumin when albumin is less than 4. The equation for the adjustment is: Corrected calcium (mg/dL) = measured total Ca (mg/dL) + 0.8 (4.0 - serum albumin [g/dL]). If you like, here is a link to a calculator https://perinatology.com/calculators/Corrected%20Calcium.htm .
I'm putting together a presentation on Calcium and Vitamin D for Osteoporosis now. Below is the draft slide on corrected calcium.