Hi Mary. Are you seeing an endocrinologist? I see one every 3 months and she has me do a comprehensive panel of blood tests before each appointment to keep track of my bone breakdown rate, parathyroid levels (I developed hyperparathyroidism about a year after starting Reclast), and a lot of other blood levels such as Vitamin D and calcium, a complete blood panel, and more. She is at a top university medical center. I can’t counsel you on the Prolia because I am not an endocrinologist, but I have the same concerns about rebound rapid bone loss if I were to take it and then stop taking it. My endocrinologist has had me on Reclast annual infusions for 4 years and I have not had a fracture since I started. My bone breakdown rate went from 27 (high) to 12.5 (better). I will get a fifth Reclast infusion next year to try to get that rate under 10. Then a drug vacation of approximately 3 years and Reclast treatment starts again. The drug vacation is to prevent femur fracture from being on Reclast too long without a break. If this protocol continues to work I will be on it indefinitely (minimum of 3 years and maximum of 5 years of annual Reclast infusions followed by a drug vacation). If the Reclast, which is an antiresorbtive (sp?) medication isn’t sufficient, I will then go on a bone builder, likely Forteo or Tymlos (Evenity, according to my endocrinologist, may not be an option for me because there is a slight chance of cardiac issues, stroke and blood clots and I have a history of deep vein thrombosis from sepsis after e- coli blood poisoning.) That’s why it’s so important to see an endocrinologist with very deep knowledge of drugs and side effects. My endo also makes it clear that it is imperative to do weight training in conjunction with drug treatment to load my bones, which makes them stronger. This is so important for me that it is like my second job! Three times weekly, for an hour, I take a very challenging class that includes 160 squat reps and a full body workout. My mother, who smoked and didn’t exercise, ended up in a wheelchair from osteoporosis and that keeps me going to my weight classes whether I want to or not. After 14 fractures, I’ve learned that this disease is nothing to take lightly. I put a lot of work in but I am now 68 and running, doing 100 floors on the Stairmaster with a 5 or 10 pound weight in a small backpack once a week, and pretty active. We are all afraid of bisphosphenates and other drugs, but I don’t know where I would be without them and the close monitoring of a very knowledgeable and caring endocrinologist. Remember the motto, “when your muscles go away, your bones go away” and don’t let sarcopenia (age-related muscle wasting) compound your osteoporosis risk. (That said, consult with your endocrinologist first to make sure sure your bones are not too weak for weight training — sometimes weights that are too heavy for bones that are weakened from severe osteoporosis can fracture, so get your doc’s clearance, start very light on weights until you learn impeccable form, and build up slowly but steadily. Hope this helps and good luck to you!
You are exceedingly fortunate to have an endo and a good one at that. From what I gather on Connect, many of us struggle to find this necessary expertise.
Your posting is so full of interesting detail. Thank you.
Could you please explain about a 'bone breakdown' rate and how it is calculated?