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.
Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
Thanks, Michael, for your very helpful and encouraging remarks. And thanks for posting your CTX score - it is reassuring that my low CTX may not be a cause for worry. Without any baseline BTM tests, i can only speculate that my baseline CTX was relatively low because Prolia did not increase my bone density much over the 3 injections. Which would hopefully mean that there are less "pre-mature" osteoclasts floating around
Yes, i plan to do another BTM in 2-3 months to monitor my CTX and calcium level. My PCP had prescribed 900mg calcium carbonate daily but i was concerned about overly high level of calcium causing calcification of arteries so i opted for 500mg of calcium hydroxyapatite instead. Will now supplement this with 200mg and 400mg of calcium citrate on alternate days. Not sure if that will be sufficient to lift up the calcium level into the recommended range. Btw, the 8.3 is the "corrected" calcium number by my doctor - the original number was 8.4.
I didn't really look at the PTH number as it fell within the recommended range. Your conversion is correct but trying to understand why you think it should be 60-70 pg/mL because from my googling, the normal range is between 15-65 pg/mL:
https://my.clevelandclinic.org/health/articles/22355-parathyroid-hormone
Unless you are saying that the PTH should have increased to compensate for the low calcium. Perhaps something to discuss with my doctor.
Thanks again, Michael for sharing your wealth of knowledge and all the best
Thank you very much for your explanation. I got the conversion part. Is the corrected calcium level a better indication of calcium deficiency (or overage)? If so, whats the reference range?
Overall I'm still not quite getting how a blood calcium level would indicate whether or not a person is calcium difficient. It's said that our own PTH, if at normal functional level, would fine tune our blood calcium level to normal range for vital functions such as nerve, heart and muscle. And the biggest reservoir in the body for calcium is bone. That is, if we are truly difficient in calcium, our bones will be sacrificed to maintain a normal blood calcium level. How do blood level of free calcium ion, albumin bound calcium or other calcium salts reflect whether or not a person is actually difficient of calcium, if at all?
Yes, the corrected calcium level is a better indication of calcium level and it uses the same range as total calcium listed on your calcium test (high-low range). The Mayo Clinic Calcium reference value is 8.8-10.2 mg/dL for people over 60.
Great job on your explanation of the calcium control system. You are spot on. Your body will do everything it can to maintain a set point your body wants to be at. However, if your body cannot get calcium from your bone fast enough (like when your on a drug like Prolia or alendronate) then you need to ensure you are getting enough from your diet. For me, I'm on Prolia and have hypercalciuria (peeing out too much calcium), so I really have to be consistent on calcium intake. Prolia just go a new block box warning for hypocalcemia for kidney patients for this reason I believe.
The corrected calcium number really only comes into play if you have an albumin problem and your calcium numbers look off, or if you are investigating hyperparathyroidism. Most people don't have to worry about corrected calcium. Perhaps I should not have mentioned it without a better explanation.
Hi formisc - Yes, the standard range for PTH is 15-65 pg/mL, however, it will go higher and even out of range when your body has a low calcium level. This is the signal to your bone, kidneys, and intestines to gather more calcium into your blood. My last blood test where my calcium dropped to 8.7 (normally around 9.5), my PTH jumped to 70 (normally 45). So I increased my calcium to get it back up. Prolia (or bisphosphonates) can make it tough for your body to get calcium from your bones when it needs it, which is good for bones, but bad for your bodies ability to control calcium without adequate diet calcium.
Now let's talk about calcium intake and supplements. I'm actually working on a presentation for next month on Calcium and Vitamin D for Osteoporosis for Bone Buddies. Calcium is a sensitive subject because there is a lot or religious beliefs surrounding types of calcium.
First, calcium intake. Dr. Fred Coe, who is recognized by many doctors as the worlds best nephrologist, did a study showing the average normal person needs ~700mg of calcium just to break even on bone balance. If you have elevated urine calcium, it's REALLY tough to get enough calcium to get to bone balance. If you cannot get to bone balance, you will lose bone, full stop. The body cannot manufacture calcium, it has to come from your diet or bones. Below is a draft slide from my presentation that shows the study outcome. I'm actually not surprised you did not gain much bone mass on Prolia if you were not getting adequate calcium.
Second, calcium supplements. Now I know I'm going to get pushback here, but calcium is calcium. When you take a calcium supplement like calcium citrate, calcium carbonate, calcium phosphate (hydroxyapatite) or others, it will be broken down into it's components before it is absorbed from the intestine into the blood stream. Calcium Ion (aka "free calcium") is what will be absorbed into the bloodstream. Now if you're low in some other mineral, then for convenience, you could take calcium with magnesium or vitamin D or whatever. They do not have to be taken at the same time. As long as your blood levels of magnesium or vitamin D are good, you don't need to take them with calcium. Here is a link to Dr. Bilezikian outlining this point https://youtu.be/fTEvmkxTG1g?si=ZRA0kKLlJ3kmdPb1 . Watch for two slides. I will have more details to share next month on calcium and vitamin D. It's too hard to put it all it text on a message board so you will have to wait for the video 🙂
Finally the disclaimer. I'm not a doctor, I'm a researcher trying to help others, based on my experience, be better prepared to talk to their doctors. While you should ensure your doctor is up to speed on current research, never take some random persons position over your doctors. It's just too risky.
Sorry, use this link for Dr. Bilezikian video https://youtu.be/fTEvmkxTG1g?si=wuxwBDYzQp9JLhm-&t=4913 . It starts at 1:21:53. Also, keep listening to the video to hear about upper levels of calcium before it starts to cause a problem with your heart. It will help make you feel better about upping your calcium without worrying so much about problems.
I worry far more about albumin/globulin ration than I ever would about albumin/calcium ratio. Different priorities.
Thanks a lot Michael, for explaining and sharing your knowledge.
I read blood magnesium testing has the same problem. To have a real gauge on whether we are truely deficient of these elements, fancier and more expensive tests are required 🤷🏻♂️
I appreciate comments and research that you have both done,as well as, your willing to share. Michael please inform us when you have your next video out. How often do you get your labs run -vit D, 24 hour urine etc. ?
Two things @michaellavacot:
I have been told to take calcium and magnesium at least two hours apart, because they compete.
My blood calcium is always 10.2-10.3. I usually take 600-1000mg in a supplement with dairy allergy. Your blood level, you said, was 0.5 but it dipped to 8.7. Yet you have hypercalcemia that is bad enough that you are avoiding Forteo and Tymlos.
I have stage 3 kidney disease (eGFR as low as 36 and as high as 51). But my kidneys do not leak calcium. What is the significance of your high calcium in urine vs normal/low normal in blood?
My PTH is always normal. Doctors have not commented on my 10.3 calcium blood test. I know there are deeper tests for PTH function but I have responded well to Tymlos so leaving that issue for now.
I have not heard of Tymlos.
I’ve been told to begin Fosomax, because I’m susceptible to fracture.
I have not made a decision to begin that or Reclast.
In fact. I am seeking out ways to build bone without medicine. Any advice???