Has anyone else on Reclast developed hyperparathyroidism?
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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@mjwg
Looks like you did really well in bringing your number down.
@mjwg
@susanop I just looked my PTH numbers and the highest was 139 and it went down to 66 by last October (normal range is 10-65). I will have it tested again in late June, 2026. I don’t experience any side effects from the Calcitriol that I an aware of. I do get drowsy in the afternoon, but I think that’s just age (I’m 69), and I’m usually up at 4-5 am. The only thing I might suggest is, if you are taking Calcitriol, maybe take it the morning because Vitamin D can keep you at night. Because Calcitriol is an activated form of D that is more potent and, I think, more easily absorbed, I would think that might keep you up at night as well, but I really don’t know if that’s true. A good question for your doctor. 🤔
BTW, I had 13 fractures: 3 wrist, 1 kneecap, 5 foot, 3 toe, and one femoral neck (hip) before Reclast and I haven’t had another fracture since I started Reclast. It has been well worth the side effects for me. I even stumbled a couple of times and went down — once while gardening and hit the concrete driveway and once while running in the woods after I tripped on a tree root and face planted. No breaks! Reclast and loading my bones with heavy weights 2-3x a week in a group barbell class (my endo really emphasized how important weight training was) have really changed my life for the better. One hears so much scary stuff about the drugs, but when you consider the risks of implanting 3 screws in my hip (in the hospital during Covid before vaccines were developed) and two surgeries and plates in my wrists and the possibility of infections or complications from those surgeries, plus eight weeks using a walker after my hip surgery (very depressing after a lifetime of running and half -marathons), the side effects of Reclast and even the elevated PTH seem mild by comparison. BTW, even when my PTH was at its highest, my endo (who is very caring) was unconcerned, noting the some people have PTH levels much higher than that, so try not to worry too much. I worried too much about it, in retrospect!
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1 ReactionThank you for the information !
I haven’t had any side effects from the Reclast thankfully. I am 68 and do weights, walk, and do some lumbar stabilization exercises due to a back surgery i had two years ago. Still dealing with that a bit. I can’t imagine having so many fractures. So glad the Reclast is working for you!! I hope to hear from the Dr next week so i’ll let you know what she says.
@susanop
My PTH was 194 six months after having a Reclast infusion, but it dropped to 41 after adding more calcium supplements. I now take 1200 mg of calcium per day and my levels are good. I had a horrible reaction to the infusion and ended up in the emergency room with tremendous severe bone pain. The Endocrinologist I went to after this happened said that I should have had blood work and a 24 hour urine test to make sure my calcium levels were good before the infusion. At this point, I am very leery over having another infusion.
@jozer baseline before menopause.
@dvargo absolutely baseline at menopause! And at least every two years thereafter (they say bone health changes slowly). Insurance companies have allowed us to get mammograms yearly; 20% bone loss first 5-7 years after menopause and we are not monitoring that. Menopause at 50; DEXA not until 65 is current protocol. Not what I consider health care!
@jozer Ii had my first dexa at 42 before menopause. That is what I am advocating for,
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1 ReactionYou and me both, dvargo. I have lectured my daughters like crazy (especially the one on Synthroid, known to mess up bone density) to scream yell and insist on a minimum of a dexa at menopause, and for the Synthroid daughter (she is 32) to start asking about this medication and her bone health now. I also tell them often to make sure you are getting calcium and vitamin D - eat foods, take supplements, whatever. Just make sure those are covered in your nutrition. Daughters love moms who lecture!