It is hard to comment without knowing your DEXA scores, and whether you have fractured or not. If early osteoporosis there may be natural or "holistic" approaches that could help. If your fracture risk is high, there are different classes of medications. Anti-resorptives include Prolia and bisphosphonates. Bone builders include Forteo, Tymlos, and Evenity. What does your doctor recommend?
Get a referral to an endocrinologist, or an orthopedic clinic that specializes in osteoporosis. There are too many variables for anyone on the forum to tell you what to do, and there are multiple options, but which one is best really depends on your personal medical history. Good luck.
Thank-you,
I was just diagnosed, I have had multiple surgeries, on my spine, and neck hands and feet, and these are all from stenosis, and from worn out joints. Carpal tunnel, CMC joint arthoplasty. Trigger finger, ACDF Bunion surgery. Revision lower lumbar surgery.
I don’t have fractures.
I just want the safest way to keep my osteoporosis from getting worse.
I have osteoarthritis too, my heritage is 1/2 Azch Jewish and 1/2,Eastern block
Any input ?
This is just an interesting aside note: I did some research and found that Ashkenazi Jews have a significantly higher risk of osteoporosis. I am 95% Ashkenazi and my mother has bad osteoporosis as well as my Ashkenazi Jewish friend. Looks like we can add this UN-fun affliction to our propensity for myopia and allergies. 🙄. I tried to treat mine
naturally with running and weight training and that helped my lower body (which has severe osteopenia), but I didn’t do enough weight training in my upper body to remedy the weak bones (I have severe osteoporosis there). I started on Reclast last year and my bone breakdown rate went from 27 (which is high) to 17 — good results according to my endo. My endo says weight training is great but you should check with a doctor that you can do this because if your bones are too weak and weights are too heavy you can cause fractures! I was at the point that a bone would break if I stubbed a toe and had 14 fractures overall (fifth metatarsal 4 times, toes, left hip, kneecap, 3 wrist fractures). I am a healthy half marathoner, 65 years old, very fit, 5’8” 125 pounds.
After a year on Reclast (no side effects, by the way, except for a slight flulike feeling for a few days after the infusion, which I had over 45 minutes rather than the usual 20 - and drank LOTS of water before and after). This summer, about 10 months after the infusion, my weak ankle rolled while I was gardening and I fell on the concrete driveway and got up and walked away with no broken bones. So I think it’s working! I’m going back for my second annual infusion later today. Altho I was doing everything right and I am very against taking drugs if I can address a health problem with diet and lifestyle changes, my endo said “You have been doing everything right but it’s not enough, you need the medicine.” Best of luck to you and I hope this info about my experience helps. Feel free to contact me if you have any questions. Susan
PS: Forgot to mention that, for the past six months, I have been taking a 1-hour Group Power barbell free weight class that is very intense and I feel much stronger with better balance and have been told by my endo that this really helps keep bones and muscles strong and balance good as we age. I go three times a week for one very rigorous and challenging hour and I am committed to continuing this so my skeleton doesn’t disintegrate. I consider weight training to be essential for my continued quality of life and well being. A small upfront price to pay for staying out of the hospital and surgeries!
Thank-you,
I was just diagnosed, I have had multiple surgeries, on my spine, and neck hands and feet, and these are all from stenosis, and from worn out joints. Carpal tunnel, CMC joint arthoplasty. Trigger finger, ACDF Bunion surgery. Revision lower lumbar surgery.
I don’t have fractures.
I just want the safest way to keep my osteoporosis from getting worse.
I have osteoarthritis too, my heritage is 1/2 Azch Jewish and 1/2,Eastern block
Any input ?
I also have Ashkenazi Jewish in my background and was just diagnosed with osteopenia (scores -1.3 to -2.0 with fracture risk of 1.7/10). My doc says I’m “doing everything right”, but need to up my calcium intake. Will start PT soon to figure out more weight-bearing exercise that my hypermobile Ehlers Danlos body can handle.
Colleen Young, Connect Director | @colleenyoung | Nov 11, 2022
This discussion has been moved to the Osteoporosis support group dedicated to osteoporosis, osteopenia and bone health. See all discussion in the group here:
- Osteoporosis & Bone Health support group https://connect.mayoclinic.org/group/osteoporosis/
This is just an interesting aside note: I did some research and found that Ashkenazi Jews have a significantly higher risk of osteoporosis. I am 95% Ashkenazi and my mother has bad osteoporosis as well as my Ashkenazi Jewish friend. Looks like we can add this UN-fun affliction to our propensity for myopia and allergies. 🙄. I tried to treat mine
naturally with running and weight training and that helped my lower body (which has severe osteopenia), but I didn’t do enough weight training in my upper body to remedy the weak bones (I have severe osteoporosis there). I started on Reclast last year and my bone breakdown rate went from 27 (which is high) to 17 — good results according to my endo. My endo says weight training is great but you should check with a doctor that you can do this because if your bones are too weak and weights are too heavy you can cause fractures! I was at the point that a bone would break if I stubbed a toe and had 14 fractures overall (fifth metatarsal 4 times, toes, left hip, kneecap, 3 wrist fractures). I am a healthy half marathoner, 65 years old, very fit, 5’8” 125 pounds.
After a year on Reclast (no side effects, by the way, except for a slight flulike feeling for a few days after the infusion, which I had over 45 minutes rather than the usual 20 - and drank LOTS of water before and after). This summer, about 10 months after the infusion, my weak ankle rolled while I was gardening and I fell on the concrete driveway and got up and walked away with no broken bones. So I think it’s working! I’m going back for my second annual infusion later today. Altho I was doing everything right and I am very against taking drugs if I can address a health problem with diet and lifestyle changes, my endo said “You have been doing everything right but it’s not enough, you need the medicine.” Best of luck to you and I hope this info about my experience helps. Feel free to contact me if you have any questions. Susan
PS: Forgot to mention that, for the past six months, I have been taking a 1-hour Group Power barbell free weight class that is very intense and I feel much stronger with better balance and have been told by my endo that this really helps keep bones and muscles strong and balance good as we age. I go three times a week for one very rigorous and challenging hour and I am committed to continuing this so my skeleton doesn’t disintegrate. I consider weight training to be essential for my continued quality of life and well being. A small upfront price to pay for staying out of the hospital and surgeries!
Thanks so much for your post. I do exercise regularly, but had hyper parathyroid syndrome which sucked all the calcium from my bones. I just fell and fractured my wrist and I’m feeling very discouraged about the risk of fractures! I also did weight training at home but will join a class as you recommend. I was on Evenity for a year and had my first dose of prolia, but I may switch to reclass because I do worry about the Prolia if for some reason I had to stop or miss a dose. Would love your thoughts on that. (also having some sleep and mood side effects but I guess this is just what I have to put up with.) Again, thank you for your thoughtful and encouraging post.
This is just an interesting aside note: I did some research and found that Ashkenazi Jews have a significantly higher risk of osteoporosis. I am 95% Ashkenazi and my mother has bad osteoporosis as well as my Ashkenazi Jewish friend. Looks like we can add this UN-fun affliction to our propensity for myopia and allergies. 🙄. I tried to treat mine
naturally with running and weight training and that helped my lower body (which has severe osteopenia), but I didn’t do enough weight training in my upper body to remedy the weak bones (I have severe osteoporosis there). I started on Reclast last year and my bone breakdown rate went from 27 (which is high) to 17 — good results according to my endo. My endo says weight training is great but you should check with a doctor that you can do this because if your bones are too weak and weights are too heavy you can cause fractures! I was at the point that a bone would break if I stubbed a toe and had 14 fractures overall (fifth metatarsal 4 times, toes, left hip, kneecap, 3 wrist fractures). I am a healthy half marathoner, 65 years old, very fit, 5’8” 125 pounds.
After a year on Reclast (no side effects, by the way, except for a slight flulike feeling for a few days after the infusion, which I had over 45 minutes rather than the usual 20 - and drank LOTS of water before and after). This summer, about 10 months after the infusion, my weak ankle rolled while I was gardening and I fell on the concrete driveway and got up and walked away with no broken bones. So I think it’s working! I’m going back for my second annual infusion later today. Altho I was doing everything right and I am very against taking drugs if I can address a health problem with diet and lifestyle changes, my endo said “You have been doing everything right but it’s not enough, you need the medicine.” Best of luck to you and I hope this info about my experience helps. Feel free to contact me if you have any questions. Susan
PS: Forgot to mention that, for the past six months, I have been taking a 1-hour Group Power barbell free weight class that is very intense and I feel much stronger with better balance and have been told by my endo that this really helps keep bones and muscles strong and balance good as we age. I go three times a week for one very rigorous and challenging hour and I am committed to continuing this so my skeleton doesn’t disintegrate. I consider weight training to be essential for my continued quality of life and well being. A small upfront price to pay for staying out of the hospital and surgeries!
Thanks so much for your post. I do exercise regularly, but had hyper parathyroid syndrome which sucked all the calcium from my bones. I just fell and fractured my wrist and I’m feeling very discouraged about the risk of fractures! I also did weight training at home but will join a class as you recommend. I was on Evenity for a year and had my first dose of prolia, but I may switch to reclass because I do worry about the Prolia if for some reason I had to stop or miss a dose. Would love your thoughts on that. (also having some sleep and mood side effects but I guess this is just what I have to put up with.) Again, thank you for your thoughtful and encouraging post.
(apologies if this post shows up twice, it looked like I responded to the wrong person!)
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!
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It is hard to comment without knowing your DEXA scores, and whether you have fractured or not. If early osteoporosis there may be natural or "holistic" approaches that could help. If your fracture risk is high, there are different classes of medications. Anti-resorptives include Prolia and bisphosphonates. Bone builders include Forteo, Tymlos, and Evenity. What does your doctor recommend?
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Helpful -
Hug
4 ReactionsGet a referral to an endocrinologist, or an orthopedic clinic that specializes in osteoporosis. There are too many variables for anyone on the forum to tell you what to do, and there are multiple options, but which one is best really depends on your personal medical history. Good luck.
-
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Helpful -
Hug
7 ReactionsThank-you,
I was just diagnosed, I have had multiple surgeries, on my spine, and neck hands and feet, and these are all from stenosis, and from worn out joints. Carpal tunnel, CMC joint arthoplasty. Trigger finger, ACDF Bunion surgery. Revision lower lumbar surgery.
I don’t have fractures.
I just want the safest way to keep my osteoporosis from getting worse.
I have osteoarthritis too, my heritage is 1/2 Azch Jewish and 1/2,Eastern block
Any input ?
-
Like -
Helpful -
Hug
2 ReactionsAgain we do not know your DEXA scores. Are you contemplating medications or a holistic approach? Sorry for your pain.
This is just an interesting aside note: I did some research and found that Ashkenazi Jews have a significantly higher risk of osteoporosis. I am 95% Ashkenazi and my mother has bad osteoporosis as well as my Ashkenazi Jewish friend. Looks like we can add this UN-fun affliction to our propensity for myopia and allergies. 🙄. I tried to treat mine
naturally with running and weight training and that helped my lower body (which has severe osteopenia), but I didn’t do enough weight training in my upper body to remedy the weak bones (I have severe osteoporosis there). I started on Reclast last year and my bone breakdown rate went from 27 (which is high) to 17 — good results according to my endo. My endo says weight training is great but you should check with a doctor that you can do this because if your bones are too weak and weights are too heavy you can cause fractures! I was at the point that a bone would break if I stubbed a toe and had 14 fractures overall (fifth metatarsal 4 times, toes, left hip, kneecap, 3 wrist fractures). I am a healthy half marathoner, 65 years old, very fit, 5’8” 125 pounds.
After a year on Reclast (no side effects, by the way, except for a slight flulike feeling for a few days after the infusion, which I had over 45 minutes rather than the usual 20 - and drank LOTS of water before and after). This summer, about 10 months after the infusion, my weak ankle rolled while I was gardening and I fell on the concrete driveway and got up and walked away with no broken bones. So I think it’s working! I’m going back for my second annual infusion later today. Altho I was doing everything right and I am very against taking drugs if I can address a health problem with diet and lifestyle changes, my endo said “You have been doing everything right but it’s not enough, you need the medicine.” Best of luck to you and I hope this info about my experience helps. Feel free to contact me if you have any questions. Susan
PS: Forgot to mention that, for the past six months, I have been taking a 1-hour Group Power barbell free weight class that is very intense and I feel much stronger with better balance and have been told by my endo that this really helps keep bones and muscles strong and balance good as we age. I go three times a week for one very rigorous and challenging hour and I am committed to continuing this so my skeleton doesn’t disintegrate. I consider weight training to be essential for my continued quality of life and well being. A small upfront price to pay for staying out of the hospital and surgeries!
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Like -
Helpful -
Hug
6 ReactionsI also have Ashkenazi Jewish in my background and was just diagnosed with osteopenia (scores -1.3 to -2.0 with fracture risk of 1.7/10). My doc says I’m “doing everything right”, but need to up my calcium intake. Will start PT soon to figure out more weight-bearing exercise that my hypermobile Ehlers Danlos body can handle.
This discussion has been moved to the Osteoporosis support group dedicated to osteoporosis, osteopenia and bone health. See all discussion in the group here:
- Osteoporosis & Bone Health support group https://connect.mayoclinic.org/group/osteoporosis/
@calygirl84 as you navigate this new reality with osteoporosis, you may also be interested in these related discussions:
- Osteoporosis treatments: What did you choose? https://connect.mayoclinic.org/discussion/osteoporosis-treatments-1/
- Your tips for healthy living with osteoporosis: What helps? https://connect.mayoclinic.org/discussion/your-tips-for-healthy-living-with-osteporosis-what-helps/
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1 ReactionThanks so much for your post. I do exercise regularly, but had hyper parathyroid syndrome which sucked all the calcium from my bones. I just fell and fractured my wrist and I’m feeling very discouraged about the risk of fractures! I also did weight training at home but will join a class as you recommend. I was on Evenity for a year and had my first dose of prolia, but I may switch to reclass because I do worry about the Prolia if for some reason I had to stop or miss a dose. Would love your thoughts on that. (also having some sleep and mood side effects but I guess this is just what I have to put up with.) Again, thank you for your thoughtful and encouraging post.
Thanks so much for your post. I do exercise regularly, but had hyper parathyroid syndrome which sucked all the calcium from my bones. I just fell and fractured my wrist and I’m feeling very discouraged about the risk of fractures! I also did weight training at home but will join a class as you recommend. I was on Evenity for a year and had my first dose of prolia, but I may switch to reclass because I do worry about the Prolia if for some reason I had to stop or miss a dose. Would love your thoughts on that. (also having some sleep and mood side effects but I guess this is just what I have to put up with.) Again, thank you for your thoughtful and encouraging post.
(apologies if this post shows up twice, it looked like I responded to the wrong person!)
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!
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