Parathyroid Hormone

[Rocket4006]

I have been on dialysis for 7 years. Three years ago my primary physician advised I start receiving Prolia shots for Osteoporosis. I have had approximately 6 shots and each time my PTH increases greatly until time for the next shot when it falls below normal levels. These increases in PTH have caused high calcium levels and a condition called caliciphylaxis which can become deadly. I did not go in for my last Prolia shot and I am considering having my parathyroid glands removed to continue the Prolia treatments. I know the risks of stopping Prolia. Any advice would be appreciated.

[Arcadia10]

I'm not familiar with caliciphylaxis but thought that, in the absence of any other replies so far, my experience with raised parathyroid levels while on Prolia might be of some use or interest to you.

My PTH level almost doubled while I was on Prolia (2 years, 4 shots). From 2012-2018, before I started Prolia, my PTH was between 5.1 and 5.8 pmol/L. I was not on any medication during this time, but had my bone turnover markers tested before my annual DEXA scan. In Feb 2019, 5 months after my second Prolia shot, my PTH was 9.9 pmol/L and in Jan 2020, 4 months after my fourth shot, my PTH was 10 pmol/L. My understanding from what I have read of other people's experiences on Prolia is that this is to be expected. Not everyone has their PTH tested but those that do report that their PTH spikes while on Prolia.

I discontinued Prolia because of the side effects I was experiencing, so missed my fifth shot scheduled for Mar 2020. In June 2020, my PTH was still 10 pmol/L. Six weeks later, in July, it had gone down to 8.7 pmol/L and by Sept 2020 (the anniversary of my last shot) it was 6.4 pmol/L. A month later it was down to 6 pmol/L. The downward trend continued until Aug 2021 when my PTH was 5.8 nmol/L which was within my pre-Prolia normal range. By this stage I had been off Prolia for 17 months and was taking Actonel as a relay drug. The Actonel obviously made no difference to my PTH levels, but the Prolia definitely did. My calcium levels were normal for all this time.

The last PTH test I had done, in Dec 2021, came in at 7.8 pmol/L. The only thing I can think of that might have caused this increase is the fact that I'd had three fractures in Sept 2021 and had switched from Actonel to Fosamax. This reminds me that I should have another panel of bone turnover markers done now.

Please do not stop Prolia without transitioning to a relay drug for at least 24 months. Missing your shot by even a few weeks can be dangerous. The risk of sustaining post-Prolia rebound fractures is 10-15%. I had my fractures because I started weaning off the relay drug after 18 months - too soon, with hindsight. Actonel is also not as efficacious as Fosamax or the IV Reclast in preventing rebound fractures, I've since learned.

[Rocket4006 in reply to Arcadia10]

Thank you for your response. The most frustrating part of this is that the rheumatologist who gave me shots freely admitted he did not know the effect of Prolia on the parathyroid gland and my nephrologist asked me several times if I thought Prolia was causing the increase in PTH I did see an endocrinologist but he referred me back to my nephrologist. Because My kidneys do not function, I cannot take the other osteoporosis medications.

[FearFracture in reply to Rocket4006]

You should watch Margaret Martin’s interview with Dr. Janet Rubin. m.youtube.com/watch?v=MExrQ...(Not working as expected?)

[Rocket4006 in reply to FearFracture]

Thank you. I just watched this video and found it very helpful. I am leaning toward not stopping Prolia now but changing from a rheumatologist to an endocrinologist for administration.

[NatureGirl7 in reply to FearFracture]

Thank you, Fear Factor. I am learning so much from your posts.

[Tammbo]

Hi Rocket, The Parathyroid glands are extremely important. as their sole job is to keep your blood calcium in a tight range. Without any Parathyroids you will be very unwell.-probably the Prolia is responsible for your raised calcium and PTH levels, so a visit to an Endocrine Specialist would be a good idea .My blood calcium was 13.2 and I had one adenoma(benign growth) on one of my Parathyroid glands (we have four) which was causing the high level, and then my levels were down to 2.4 after I had it successfully removed a couple of years ago. A Surgeon will always try to keep as many of the four parathyroid glands intact as possible as they know how important they are .Even if you had a growth on all four, they will always try to keep a piece of one, due to how important they are!-Good luck, and hopefully a change of drug will reverse your levels.

[Rocket4006 in reply to Tammbo]

Thank you for your response. I am reconsidering having my parathyroid removed. I did see an endocrinologist and while he did write up a report, he referred me back to my nephrologist.

[KidneyCoach in reply to Rocket4006]

I've been on dialysis for 20+ years. My pth levels were well over 1500 for 6 years even with medication to treat. Changed nephrologists and by then pth levels were consistently over 3500. Had nuclear scan and they were removed. By then the bone loss was done and could not be recovered. Fast forward 7 years and my GP referred me to have osteoporosis meds ---after a dexa scan. I will say that by this point I had multiple spinal compression fractures from T5 to L4 and scoliosis due to bone loss. Many broken toes, fingers.

So I had a prolia injection which caused my blood calcium levels to drop dangerously low causing other issues. A month later treated for broken leg just by standing up. I chose to stop further injections. The Dr insisted on giving me another drug. . . which was merely a synthetic pth hormone drug!!!! This would have caused dangerously high pth levels and MORE bone loss. For dialysis patients there are virtually NO studies done regarding any osteoporosis medications, the side effects, if they remain in system or dialyzed out, if helpful etc. This experience also shows how little most doctors know about such drugs on/with those on dialysis and osteoporosis. We are walking in uncharted territory. I will say I have had only one broken bone since stopping Prolia 5 years ago and it was a toe.

I wish I could help. I wanted to share. Blessings

[Rocket4006 in reply to KidneyCoach]

Thank you. This was very helpful. I was shocked when I realized none of my doctors knew anything about this drug. I really felt kind of betrayed. Now I am in a mess and they still can offer no advice.

[KidneyCoach in reply to Tammbo]

I've had all 4 glands removed 12 years ago. Best decision I made.

[Geedle]

I am 68 and the MDs are considering a diagnosis of hyperparathyroidism. I am looking into the Norman Parathyroid Center in Tampa Florida. They have a wealth of info on the web and are suppose to be world experts.