Has anyone else on Reclast developed hyperparathyroidism?

Posted by susanop @susanop, Mar 3, 2024

Hi all. I'm an athletic almost 67-year-old runner and weight trainer eating a plant based diet. I went on Reclast 2.5 years ago and about a year after my first annual Reclast infusion developed hyperparathyroidism. My endocrinologist had me on 50,000 Vitamin D for the past 2 years but levels keep going up (they went down briefly but are now at 132 PTH). My endo did not say what caused elevated PTH but I've seen a few references in online PubMed studies to Hyperparathyroidism secondary to bisphosphenates. Does anyone know about this? Any info you can provide would be greatly appreciated!

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Profile picture for susanop @susanop

Hi — my endocrinologist at Loyola Medical Center in Maywood Illinois is Rod Arceo Mendoza MD. Does your daughter have thyroid issues (rather than parathyroid issues like I have — in a previous post I mistakenly described what I had as hyperthyroidism instead of hyperPARAthyroidism, which may have confused some people — completely different condition and body part!) Dr. Mendoza is a great doctor with a good deal of compassion. Regarding the Reclast, my experience with it (other than the hyperparathyroidism, which it turns out was not caused by the Reclast, but by low vitamin D levels, according to my endo) has not been bad. Barring fatigue for a few days following the annual infusions, I haven’t had any bad side effects. I’ve had four infusions over four years. Drink a lot of water before and after the infusion and ask for the infusion over 45 minutes instead of 20 minutes and flush your kidneys well by drinking a lot of water afterward. After breaking 14 bones over the course of two decades, I haven’t broken a bone since I started the Reclast, and my Dexa scan numbers are getting better, and my bone breakdown rate is slowing as well. All in all, it is far preferable to being in a cast or a boot or having the two surgeries to put screws and a plate in my hip wrist. (Nothing like spending a week in the hospital during the early phase of the COVID pandemic.) Just be sure to have any invasive dental work such as extractions or implants done before you start. There is a protocol for women on Reclast who need extractions (I had to have two wisdom teeth extracted during my third year of Reclast treatment) and luckily my oral surgeon was trained by the professor who developed the protocol. It involves taking antibiotics and having blood drawn on the day of the extraction, which they spin in a centrifuge to create a clot that is placed in the hole where the tooth was to promote healing. It all went well. This was to prevent infection. Not sure about implants tho. My endo explained that the fear many of us have about osteonecrosis of the jaw (listed as a rare side effect of Reclast) has to do with the treatment for women with bone cancer, who get infusions every 6 weeks, not just once a year. This made me feel much better! Remember the pain and mobility issues that come with broken bones, as well as the risks associated with hip surgery, such as infection. I’d much rather deal with Reclast issues than any more broken bones or more metal in my body. Breaking my hip was devastating— as I was an active and very fit runner training for a half marathon when I broke it. I spent a full year in rehab, starting with a walker. I’m now running again and weight training but coming back from that surgery was really challenging. My mother also had severe osteoporosis and just took Fosamax (which gave her stomach issues as well) and ended up in a wheelchair because her hips broke so many times that there was no hip socket left on one side and she was left with a floating femur and no socket to hold it in place. Her quality of life was terrible. I’m glad I took this path and think it’s important for everyone to consider the risks and low quality of life associated with fragile bones. BTW, my endo also has me strength training with barbells 3x a week because stronger muscles mean stronger bones and she says the Reclast and the strength training together are much more effective than either one alone. Each time I think about skipping that group strength training class, I hear her voice saying “I can’t stress enough how important it is for you to continue strength training,” and I head to the gym! I recently read that “When your muscles go away, your bones go away.” That’s a scary thought! A good book to read is Next Level, by Dr. Stacy Sims, about how to stay strong and active after menopause. Very inspiring! Good luck on your journey. Happy to answer any other questions!

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Thank you thank you thank you! Lots of good information. I will pass the information to my daughter as she really needs to see an endo; especially with thyroid issues and medication plus the fact that I have osteo. Hard to make some of these decisions especially when for many of us there are zero symptoms - truly silent disease. I broke my wrist bone a couple of years ago; in a car wreck (air bag injury) and both the EMT and the ER doc said "we see this all the time from air bags" many people (not just we postmenopausal women) break bones from trauma. Of course no one ever suggest a DEXA scan "not until 65" (how about a baseline at menopause; maybe you would have a chance to step up the Vitamin D, calcium and exercise). Your points are well taken and thanks so much for sharing; taking a chance on a breaking something and the healing processes required can be a LOT worse than the slim probability of severe side effects from the osteo drugs. Still scary; Reclast being a once a year infusion means you can't just stop taking it if you are one of the folks that experience severe side effects. I am going to get a second and even a third opinion to see what drug everyone thinks is best as there are a lot of them out there. Not sure about family osteo; my mom was doing aerobics with weights well into her 70s (cancer slowed her down unfortunately) but she never broke anything in her life; or anyone else that I recall. I've always done aerobics with weights but have added walking (I hate walking - very boring to me!) and we were reconsidering downsizing to a single story home; but I told the hubby the stairs are great for us. Hoping your journey keeps going in the right direction!

REPLY
Profile picture for susanop @susanop

Hi — my endocrinologist at Loyola Medical Center in Maywood Illinois is Rod Arceo Mendoza MD. Does your daughter have thyroid issues (rather than parathyroid issues like I have — in a previous post I mistakenly described what I had as hyperthyroidism instead of hyperPARAthyroidism, which may have confused some people — completely different condition and body part!) Dr. Mendoza is a great doctor with a good deal of compassion. Regarding the Reclast, my experience with it (other than the hyperparathyroidism, which it turns out was not caused by the Reclast, but by low vitamin D levels, according to my endo) has not been bad. Barring fatigue for a few days following the annual infusions, I haven’t had any bad side effects. I’ve had four infusions over four years. Drink a lot of water before and after the infusion and ask for the infusion over 45 minutes instead of 20 minutes and flush your kidneys well by drinking a lot of water afterward. After breaking 14 bones over the course of two decades, I haven’t broken a bone since I started the Reclast, and my Dexa scan numbers are getting better, and my bone breakdown rate is slowing as well. All in all, it is far preferable to being in a cast or a boot or having the two surgeries to put screws and a plate in my hip wrist. (Nothing like spending a week in the hospital during the early phase of the COVID pandemic.) Just be sure to have any invasive dental work such as extractions or implants done before you start. There is a protocol for women on Reclast who need extractions (I had to have two wisdom teeth extracted during my third year of Reclast treatment) and luckily my oral surgeon was trained by the professor who developed the protocol. It involves taking antibiotics and having blood drawn on the day of the extraction, which they spin in a centrifuge to create a clot that is placed in the hole where the tooth was to promote healing. It all went well. This was to prevent infection. Not sure about implants tho. My endo explained that the fear many of us have about osteonecrosis of the jaw (listed as a rare side effect of Reclast) has to do with the treatment for women with bone cancer, who get infusions every 6 weeks, not just once a year. This made me feel much better! Remember the pain and mobility issues that come with broken bones, as well as the risks associated with hip surgery, such as infection. I’d much rather deal with Reclast issues than any more broken bones or more metal in my body. Breaking my hip was devastating— as I was an active and very fit runner training for a half marathon when I broke it. I spent a full year in rehab, starting with a walker. I’m now running again and weight training but coming back from that surgery was really challenging. My mother also had severe osteoporosis and just took Fosamax (which gave her stomach issues as well) and ended up in a wheelchair because her hips broke so many times that there was no hip socket left on one side and she was left with a floating femur and no socket to hold it in place. Her quality of life was terrible. I’m glad I took this path and think it’s important for everyone to consider the risks and low quality of life associated with fragile bones. BTW, my endo also has me strength training with barbells 3x a week because stronger muscles mean stronger bones and she says the Reclast and the strength training together are much more effective than either one alone. Each time I think about skipping that group strength training class, I hear her voice saying “I can’t stress enough how important it is for you to continue strength training,” and I head to the gym! I recently read that “When your muscles go away, your bones go away.” That’s a scary thought! A good book to read is Next Level, by Dr. Stacy Sims, about how to stay strong and active after menopause. Very inspiring! Good luck on your journey. Happy to answer any other questions!

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@susanop
Thank you for the lengthy and informative comment. Could you please share the name of the dental protocol when on Reclast and the dr’s name as well.
Thank you,
Mdm30

REPLY
Profile picture for mdm30 @mdm30

@susanop
Thank you for the lengthy and informative comment. Could you please share the name of the dental protocol when on Reclast and the dr’s name as well.
Thank you,
Mdm30

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@mdm30 hi there. The oral surgeon is Dr. Hamadani at Cameo Dental Specialties in the Chicago area. I don’t know the name of the protocol, but it involves taking antibiotics the week leading up to the oral surgery and having some of your blood drawn and centrifuged. Later that blood is inserted into the socket that is left after the tooth is pulled to prevent dry socket and infection, which can cause osteonecrosis of the jaw. Dr. Hamadani’s professor at dental school, I think, either developed the protocol or published some research regarding the technique. Dr. Hamadani is an excellent and meticulous surgeon and I had two wisdom teeth removed after three years of annual Reclast infusions without a problem, due to these pre-surgical protocols and the thorough follow up care. (708) 484-9011 is the number of Cameo Dental - they have a number of clinics in the Chicago area and many of their endodontist and oral surgeons work at more than one of the clinics.

REPLY

I have high PTH ( secondary hyperparathyroidism) after my Reclast infusion. I sm interested to know if this happened to anyone else and what to do about it.

REPLY
Profile picture for mdm30 @mdm30

@susanop
Thank you for the lengthy and informative comment. Could you please share the name of the dental protocol when on Reclast and the dr’s name as well.
Thank you,
Mdm30

Jump to this post

@mdm30

I tried to make a couple of edits to my reply to you last night, but they didn't get saved. The Dr.'s name is Matthew Hamadani and he is at Cameo Dental Specialists (not Specialties). His bio is at this link under Oral Maxillofacial Surgeons: https://cameods.com/oral-surgeon-chicago-il-meet-the-doctors/.

I also pasted it below:

Originally from Naperville, Dr. Matthew S. Hamedani attended the University of Illinois at Urbana-Champaign for his undergraduate and graduate studies in Molecular and Cellular Biology, and Biophysics and Computational Biology. Afterwards, he went on to earn his Doctor of Dental Surgery Degree and Masters Certificate in Clinical Research Methods from the University of Illinois at Chicago where he graduated with numerous honors at the top of his class.

After graduating dental school, Dr. Hamedani practiced as a general dentist for two years then chose to advance his education. He completed an Oral and Maxillofacial Surgery residency at the University of Miami Jackson Memorial Hospital – one of the busiest hospitals in the country. He trained under Dr. Robert Marx, a world-renowned surgeon and expert in pathology and reconstructive surgery and received extensive experience in the full spectrum of Oral and Maxillofacial Surgery including ambulatory anesthesia, dentoalveolar surgery, dental implants, major facial trauma, orthognathic surgery, head and neck pathology and reconstructive surgery.

Dr. Hamedani prides himself on staying up to date with the latest clinical and technological advances and is committed to maintaining a professional practice that is current in all aspects of the specialty of Oral and Maxillofacial Surgery. He is a Diplomate of the American Board of Oral and Maxillofacial Surgery and is certified in Advanced Cardiac Life Support, Pediatric Advanced Life Support and Advanced Trauma Life Support. He is a fellow of the American Association of Oral and Maxillofacial Surgeons and the American College of Oral and Maxillofacial Surgeons and is an active member of the Illinois Society of Oral and Maxillofacial Surgeons and Chicago Society of Oral and Maxillofacial Surgeons.

Additionally, Dr. Hamedani is on staff at MacNeal Hospital, Advocate Illinois Masonic Medical Center, John H. Stroger Hospital of Cook County where he is an adjunct faculty in the department of surgery and at Loyola University Medical Center where he is an affiliate assistant professor of surgery in the Loyola Stritch School of Medicine.

In his free time, Dr. Hamedani enjoys spending time with his family, watching movies and reading.

OFFICE LOCATIONS
Dr. Hamedani sees patients at Cameo Dental Specialists' Berwyn, La Grange, and Elmhurst locations.

REPLY
Profile picture for mjwg @mjwg

I have high PTH ( secondary hyperparathyroidism) after my Reclast infusion. I sm interested to know if this happened to anyone else and what to do about it.

Jump to this post

@mjwg

Hi there. Here's what AI has to say -- I've read a bunch of scientific journal articles on this topic because I developed Secondary (Normocalcemic) Hyperparathyroidism about a year after my first infusion of Reclast, but this AI summary offers the most succinct and accessible explanation of why this might happen:

AI OVERVIEW
Reclast (zoledronic acid) can cause temporary secondary hyperparathyroidism. It works by significantly lowering calcium levels, which prompts the parathyroid glands to overproduce parathyroid hormone (PTH) to compensate and raise calcium back to normal. This is typically a temporary, compensatory reaction rather than a direct, permanent disease.

Key Details on Reclast and Parathyroid Function:
Mechanism: As a potent bisphosphonate, Reclast stops bone breakdown, often causing a rapid drop in blood calcium (hypocalcemia), which signals the parathyroid to release more hormone.
Secondary Hyperparathyroidism: This increase in PTH is a recognized, but sometimes underappreciated, side effect following intravenous bisphosphonate infusion.
Risk Factors: The risk is higher in patients with low vitamin D, impaired kidney function, or high rates of bone turnover, according to PMC6667807 and PMC2704135.
Prevention: Ensuring adequate Calcium and Vitamin D intake before and after infusion helps prevent this reaction.
PubMed Central (PMC) (.gov)
PubMed Central (PMC) (.gov)
+4
Yes, Reclast (zoledronic acid) can cause secondary hyperparathyroidism.
National Institutes of Health (.gov)
National Institutes of Health (.gov)
+1
This condition is typically a normal compensatory response by the body rather than a permanent disease of the parathyroid glands.
How Reclast Affects Parathyroid Hormone (PTH)
Mechanism: Reclast works by stopping bone resorption, which prevents calcium from being released from your bones into your bloodstream.
The Reaction: This can cause a temporary drop in blood calcium levels (hypocalcemia).
The Response: To fix this drop, your parathyroid glands produce more parathyroid hormone (PTH) to bring calcium levels back to a healthy range. This elevation in PTH is what is known as secondary hyperparathyroidism.
National Institutes of Health (.gov)
National Institutes of Health (.gov)
+4
Key Considerations
Pre-treatment Checks: Doctors usually check your calcium and Vitamin D levels before a Reclast infusion to ensure you aren't at high risk for severe hypocalcemia, which could trigger a stronger PTH response.
Primary vs. Secondary: Reclast is generally not a cause of primary hyperparathyroidism (which is usually caused by a benign tumor on the gland itself). In fact, Reclast is sometimes used to help protect the bones of people who already have primary hyperparathyroidism.
Duration: For most people, this PTH increase is a transient adjustment as the body balances its calcium.
National Institutes of Health (.gov)
National Institutes of Health (.gov)

BTW, my hyperparathyroidism was secondary (meaning not a primary disease of the parathyroid glands, but a result of something else) and normocalcemic (meaning it did not cause elevated calcium levels, which could in turn contribute to a loss of bone density). This seems to correspond with the info that AI consolidated from NIH and PubMed sources. After a couple of years of being treated with Vitamin D3 and Calcitriol (and tuning in the Calcitriol dosage) my parathyroid (PTH) levels are closer to normal.

REPLY
Profile picture for susanop @susanop

@mdm30

I tried to make a couple of edits to my reply to you last night, but they didn't get saved. The Dr.'s name is Matthew Hamadani and he is at Cameo Dental Specialists (not Specialties). His bio is at this link under Oral Maxillofacial Surgeons: https://cameods.com/oral-surgeon-chicago-il-meet-the-doctors/.

I also pasted it below:

Originally from Naperville, Dr. Matthew S. Hamedani attended the University of Illinois at Urbana-Champaign for his undergraduate and graduate studies in Molecular and Cellular Biology, and Biophysics and Computational Biology. Afterwards, he went on to earn his Doctor of Dental Surgery Degree and Masters Certificate in Clinical Research Methods from the University of Illinois at Chicago where he graduated with numerous honors at the top of his class.

After graduating dental school, Dr. Hamedani practiced as a general dentist for two years then chose to advance his education. He completed an Oral and Maxillofacial Surgery residency at the University of Miami Jackson Memorial Hospital – one of the busiest hospitals in the country. He trained under Dr. Robert Marx, a world-renowned surgeon and expert in pathology and reconstructive surgery and received extensive experience in the full spectrum of Oral and Maxillofacial Surgery including ambulatory anesthesia, dentoalveolar surgery, dental implants, major facial trauma, orthognathic surgery, head and neck pathology and reconstructive surgery.

Dr. Hamedani prides himself on staying up to date with the latest clinical and technological advances and is committed to maintaining a professional practice that is current in all aspects of the specialty of Oral and Maxillofacial Surgery. He is a Diplomate of the American Board of Oral and Maxillofacial Surgery and is certified in Advanced Cardiac Life Support, Pediatric Advanced Life Support and Advanced Trauma Life Support. He is a fellow of the American Association of Oral and Maxillofacial Surgeons and the American College of Oral and Maxillofacial Surgeons and is an active member of the Illinois Society of Oral and Maxillofacial Surgeons and Chicago Society of Oral and Maxillofacial Surgeons.

Additionally, Dr. Hamedani is on staff at MacNeal Hospital, Advocate Illinois Masonic Medical Center, John H. Stroger Hospital of Cook County where he is an adjunct faculty in the department of surgery and at Loyola University Medical Center where he is an affiliate assistant professor of surgery in the Loyola Stritch School of Medicine.

In his free time, Dr. Hamedani enjoys spending time with his family, watching movies and reading.

OFFICE LOCATIONS
Dr. Hamedani sees patients at Cameo Dental Specialists' Berwyn, La Grange, and Elmhurst locations.

Jump to this post

@susanop Very helpful to know the clinicians and dentists with special expertise in osteoporosis-related issues. As someone who lives in the Chicago metropolitan area, I especially appreciate knowing these people for possible future reference. Thank you!

REPLY
Profile picture for susanop @susanop

@mjwg

Hi there. Here's what AI has to say -- I've read a bunch of scientific journal articles on this topic because I developed Secondary (Normocalcemic) Hyperparathyroidism about a year after my first infusion of Reclast, but this AI summary offers the most succinct and accessible explanation of why this might happen:

AI OVERVIEW
Reclast (zoledronic acid) can cause temporary secondary hyperparathyroidism. It works by significantly lowering calcium levels, which prompts the parathyroid glands to overproduce parathyroid hormone (PTH) to compensate and raise calcium back to normal. This is typically a temporary, compensatory reaction rather than a direct, permanent disease.

Key Details on Reclast and Parathyroid Function:
Mechanism: As a potent bisphosphonate, Reclast stops bone breakdown, often causing a rapid drop in blood calcium (hypocalcemia), which signals the parathyroid to release more hormone.
Secondary Hyperparathyroidism: This increase in PTH is a recognized, but sometimes underappreciated, side effect following intravenous bisphosphonate infusion.
Risk Factors: The risk is higher in patients with low vitamin D, impaired kidney function, or high rates of bone turnover, according to PMC6667807 and PMC2704135.
Prevention: Ensuring adequate Calcium and Vitamin D intake before and after infusion helps prevent this reaction.
PubMed Central (PMC) (.gov)
PubMed Central (PMC) (.gov)
+4
Yes, Reclast (zoledronic acid) can cause secondary hyperparathyroidism.
National Institutes of Health (.gov)
National Institutes of Health (.gov)
+1
This condition is typically a normal compensatory response by the body rather than a permanent disease of the parathyroid glands.
How Reclast Affects Parathyroid Hormone (PTH)
Mechanism: Reclast works by stopping bone resorption, which prevents calcium from being released from your bones into your bloodstream.
The Reaction: This can cause a temporary drop in blood calcium levels (hypocalcemia).
The Response: To fix this drop, your parathyroid glands produce more parathyroid hormone (PTH) to bring calcium levels back to a healthy range. This elevation in PTH is what is known as secondary hyperparathyroidism.
National Institutes of Health (.gov)
National Institutes of Health (.gov)
+4
Key Considerations
Pre-treatment Checks: Doctors usually check your calcium and Vitamin D levels before a Reclast infusion to ensure you aren't at high risk for severe hypocalcemia, which could trigger a stronger PTH response.
Primary vs. Secondary: Reclast is generally not a cause of primary hyperparathyroidism (which is usually caused by a benign tumor on the gland itself). In fact, Reclast is sometimes used to help protect the bones of people who already have primary hyperparathyroidism.
Duration: For most people, this PTH increase is a transient adjustment as the body balances its calcium.
National Institutes of Health (.gov)
National Institutes of Health (.gov)

BTW, my hyperparathyroidism was secondary (meaning not a primary disease of the parathyroid glands, but a result of something else) and normocalcemic (meaning it did not cause elevated calcium levels, which could in turn contribute to a loss of bone density). This seems to correspond with the info that AI consolidated from NIH and PubMed sources. After a couple of years of being treated with Vitamin D3 and Calcitriol (and tuning in the Calcitriol dosage) my parathyroid (PTH) levels are closer to normal.

Jump to this post

@susanop
Thank you so much. I believe i am in the same situation although my number is quite high. Waiting for the Dr to respond. Your research will be very helpful. Thx

REPLY
Profile picture for mjwg @mjwg

@susanop
Thank you so much. I believe i am in the same situation although my number is quite high. Waiting for the Dr to respond. Your research will be very helpful. Thx

Jump to this post

@mjwg you are welcome. This is a brave new world that can be confusing. How high is your PTH? Mine went up to around 150 and after being on Calcitriol and adjusting the dose over time, it is now about 56, close to the normal range. These are approximate numbers - I have to check my patient portal for test results over time to give you exact numbers. LMK if you find out anything interesting from your doc?

REPLY
Profile picture for susanop @susanop

@mjwg you are welcome. This is a brave new world that can be confusing. How high is your PTH? Mine went up to around 150 and after being on Calcitriol and adjusting the dose over time, it is now about 56, close to the normal range. These are approximate numbers - I have to check my patient portal for test results over time to give you exact numbers. LMK if you find out anything interesting from your doc?

Jump to this post

@susanop
My latest test result was 190. Yikes! Hope i can bring it down. What is the Calcitriol like?

REPLY
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