Just diagnosed with osteoporosis. What are my options?

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?

Have you had side affects from the Reclast infusions? I appreciate your information. It was one of the very few non-scary Reclast posts. My first infusion is at end of August and I can't stop reading posts about nightmarish side affects. While I understand that people who have good outcomes don't post about it very much it seems the bad outcomes are overwhelming. I saw endo in June and I wish the infusion was right away bcz waiting 2 months is pure agony. I am scared to death reading these posts and it was refreshing to hear someone's positive story so I thank you. Does anyone know if having mild TMJ is a concern when getting Reclast infusions or am I just making myself crazy because I feel crazy and confused and lost.

Have you had side affects from the Reclast infusions? I appreciate your information. It was one of the very few non-scary Reclast posts. My first infusion is at end of August and I can't stop reading posts about nightmarish side affects. While I understand that people who have good outcomes don't post about it very much it seems the bad outcomes are overwhelming. I saw endo in June and I wish the infusion was right away bcz waiting 2 months is pure agony. I am scared to death reading these posts and it was refreshing to hear someone's positive story so I thank you. Does anyone know if having mild TMJ is a concern when getting Reclast infusions or am I just making myself crazy because I feel crazy and confused and lost.

Let me add another non scary Reclast post. In December '23 I had a reclast infusion and because I had a friend in Ohio who had one the week before me, I was aware of the importance of being hydrated, taking 1000mg of acetemiocine and even a Claritin before hand. Neither my endocrinologist at the time or the infusion center mentioned this.
So well prepared I had the infusion, continued to drink water and and rest for the rest of the day. I experienced zero side effects. Then in December '24 I had another scan and saw great improvement in my spine; not so much at hip level. That said, the hospital where my previous 5 scans were taken, upgraded and the new system which included TBS might not be correlate well to the previous scans. Hope to have something to compare with at this year's scan.

Let me add another non scary Reclast post. In December '23 I had a reclast infusion and because I had a friend in Ohio who had one the week before me, I was aware of the importance of being hydrated, taking 1000mg of acetemiocine and even a Claritin before hand. Neither my endocrinologist at the time or the infusion center mentioned this.
So well prepared I had the infusion, continued to drink water and and rest for the rest of the day. I experienced zero side effects. Then in December '24 I had another scan and saw great improvement in my spine; not so much at hip level. That said, the hospital where my previous 5 scans were taken, upgraded and the new system which included TBS might not be correlate well to the previous scans. Hope to have something to compare with at this year's scan.

Hi - from what I understand, the body is always building new bone and breaking down old bone. When the rate of breakdown exceeds the rate of bone formation, osteopenia and then osteoporosis sets in. Bone breakdown rate is measured quarterly for me, and if your bone breakdown rate is high, like mine was at 27, an antiresorptive is used to slow down that rate. The bone breakdown rate is measured by a simple blood test and the goal is to get that rate under 10. So in my case, Reclast has slowed that breakdown rate from 27 to 12.5 over the course of four annual Reclast infusions. My body is still building bone and I am helping it build bone by doing weight training 3x weekly with barbells for an hour in a class at Loyola Fitness Club at Loyola Medical Center in Chicago area. The teacher is extremely well informed about proper form, which helps me avoid injuries at the age of 68, when our tendons and ligaments are more susceptible to injury from bad form and moves that are sometimes called “dynamic.” Slow and steady with progressively heavier weight (but don’t go up too fast) has worked for me. Also having a teacher and classmates inspires me to push myself harder than I would if working out alone. I’ve also made friends. Thanks for writing — this is new territory for all of us as we age and we need each other!

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!