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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@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!

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