Doctors Reprimand Me For No Osteo Meds

Posted by sunnyflower @sunnyflower, Jan 8 11:46pm

Dear One's, my 1st time back on the blog in years. The block has been an inspiration, encouragement and support to me when I was active on it. I have become more ill over the years with many diseases, one of which is osteoporosis. I've had 7 hip fractures; 5 pelvic, 2 Femur. Ouch! No known trauma. Recently I've had several doctors reprimand me for not being on any osteoporosis medications. They have escalated, raised their voice , shook their heads and all of the above. One of them was a hospital doctor who knows me because of so many hospitalizations, said to me that she has seen me decline quickly in the past few years and can see me in a wheelchair in the near future. It was talking with people on the blog about around the world years ago about their experiences with bisphosphonates, Prolia and other osteoporosis medications, and doing a lot of my own research, that made me decide not to take any medications. I felt it was a quality of life issue because if you take something that lasts for 6 months (that's how I would have to take it because of kidney disease) or 1 year, then any unwanted side effects, would last until the half-life I was afraid of. I just can't take more pain! Has anybody else been treated that way by physicians for not being on osteoporosis medication? My dentist told me not to take I think it might be Alendronate aka Fosamax because she said it can cause osteonecrosis of the jaw. If my understanding is correct, the meds can improve fracture risk but not reverse osteoporosis. I have not looked into the medications in a few years. Maybe there's something new I don't know? My last two bone scans showed improvement with taking 3 mg of boron three times a day. I do take other supplements but know they are not as good as what we need that is found in food. I pray you all may experience the comfort of God and the “Peace of Christ which transcends all human understanding" Philippians 4:7. That is the only thing that gets me through is knowing Him well enough and understanding His purpose in all things and, that this life is so temporary; but a blink of an eye in light of all eternity. Jesus said, I am the Way, the Truth and the Life, no man comes to Me but by the Father." John 14:6 SunnyFlower

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Profile picture for roseincalifornia @roseincalifornia

@lovemybones The truth is it is very hard to increase your bone density via weight lifting. Most people (especially older women) are not able to lift heavy enough weights, and/or cannot afford or find a physical therapist who is able to ensure they are using proper form and do not injure themselves.

That is not to say one should not lift weights. Weights are great for building up our musclature and for general fitness.

I am very glad to hear you are on meds to increase your bmd! Good luck!

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@roseincalifornia The LIFTMOR trials used 85% of each person's 1-rep-max. Your points overall I agree with, but it is by-definition that the people in this key study were lifting less than they are "able" to lift, and that was heavy enough.

Using the correct form is very hard, as you said. I did some of the the LIFTMOR style protocol on my own after failing to find what I considered affordable PT. I did well on my own for 5 months, by studying hours of YouTube videos on correct form. But after 5 months I did eventually get a minor injury in my mid-back that took weeks to come right when I was deadlifting my new max of 100 lbs. I then got help from Physical Therapists when I was seeing them about my minor injury and then a personal trainer for 5 sessions over 2 months. Now I aim lower and have slowly worked my way back to 85lbs today. I could probably do 5 reps of 100lbs now but I am very very cautious, so yes it is hard to do some types of lifting without the ideal and "required" by LIFTMOR/ONERO full-supervision for every session from a PT.

Here is a talk by Professor Belinda Beck, the primary researcher in LIFTMOR trials, to support that you only have to lift 85% of what you personally can, not some other standard for "heavy".

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Profile picture for kfhoz @kfhoz

@gravity3 Even better may be to follow the TPH drugs teriparatide (brand Forteo) or abaloparatide (bn Tymlos) with romosozumab (bn Evenity) for max gain.

Here is one paper discussing this sequence, but it is only one piece of the picture:
https://pmc.ncbi.nlm.nih.gov/articles/PMC11601723/

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@kfhoz

This is a nice paper comparing T2R (Teripararide/Forteo to Romosozumab/Evenity) vs R2T (Romosozumab/Evenity to Teriparatide/Forteo) sequencing.

Worth noting though, in the T2R group, 59 of 69 (about 85%) patients were switched to romosozumab specifically because their response to teriparatide was clinically inadequate, as indicated by Tscores essentially having no improvements at Lspine and actually worsened at total hip/femoral neck (compare Table 1- before teriparatide vs Table 2- after Teriparatide) during "T"/teriparatide phase. These patients then had strong, statistically significant BMD gains during 12mo of "R"/romosozamab phase.

My take is, we could not simply stack 11% romosozamab gains on top of an "assumed typical" teriparatide gain, since this particular group in T2R sequence was pre-selected for having gotten little benefit from teriparatide, or a group of non-responders to teriparatide. For someone who had already achieved robust BMD gains on teriparatide, the additional gains from immediate romosozamab follow-up remains unknown.

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Profile picture for kfhoz @kfhoz

@roseincalifornia The LIFTMOR trials used 85% of each person's 1-rep-max. Your points overall I agree with, but it is by-definition that the people in this key study were lifting less than they are "able" to lift, and that was heavy enough.

Using the correct form is very hard, as you said. I did some of the the LIFTMOR style protocol on my own after failing to find what I considered affordable PT. I did well on my own for 5 months, by studying hours of YouTube videos on correct form. But after 5 months I did eventually get a minor injury in my mid-back that took weeks to come right when I was deadlifting my new max of 100 lbs. I then got help from Physical Therapists when I was seeing them about my minor injury and then a personal trainer for 5 sessions over 2 months. Now I aim lower and have slowly worked my way back to 85lbs today. I could probably do 5 reps of 100lbs now but I am very very cautious, so yes it is hard to do some types of lifting without the ideal and "required" by LIFTMOR/ONERO full-supervision for every session from a PT.

Here is a talk by Professor Belinda Beck, the primary researcher in LIFTMOR trials, to support that you only have to lift 85% of what you personally can, not some other standard for "heavy".

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@kfhoz

The average age of the participants in the LIFTMOR was 65, with std deviation of 5, which means very few of them were over 70. They were screened to make sure they were functionally healthy, which excluded a lot of weaker people.

Potential participants were excluded if they had:
(1) Uncontrolled cardiovascular or respiratory disease (2) Recent fractures (within the past 12 months) or severe localized back pain (3) Neurological or physical conditions that would prevent them from safely doing heavy resistance training (4) Active malignancies (5) A history of taking medications known to actively harm bone health (like chronic corticosteroids)

"The LIFTMOR trials used 85% of each person's 1-rep-max." Correct. There is no "standard" for "heavy". Unfortunately, for most people (esp women) who are over 70, 85% of their 1-rep-max will not likely be heavy enough to stimulate bone growth. So they will not be able to provide enough stress on their bones to increase their bmd.

If 85% of your 1-rep-max is heavy enough to stimulate your bones, that is great. I am just speaking from my experience with a lot of women over 70.

Plus how many people have access to a LIFTMOR/ONERO-style full-supervision for every session from a PT?

I am sorry you already fractured your mid-back. Dead-lifts are very dangerous to do with a pre-existing fracture to your mid-back. Most PTs would not allow their patients to do them. Exposing oneself to the risk of vertebral fractures is like playing Russian roulette. There are several people in this forum who have talked about the excruciation pain and disability that can be caused by a vertebral fracture.

I know a lot of people hate taking drugs but one cannot deny these results:

Evenity: Vertebral fractures: ≈73% decrease
Tymlos: Vertebral fractures: ≈86% decrease
Forteo: Vertebral fractures: ≈65% to 69% decrease
Prolia — Injected every 6 months: Vertebral fractures: ≈68% decrease
Reclast— Annual IV infusion: Vertebral fractures: ≈70% decrease
Fosamax — Oral weekly/daily: Vertebral fractures: ≈47% to 50% decrease

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Profile picture for roseincalifornia @roseincalifornia

@kfhoz

The average age of the participants in the LIFTMOR was 65, with std deviation of 5, which means very few of them were over 70. They were screened to make sure they were functionally healthy, which excluded a lot of weaker people.

Potential participants were excluded if they had:
(1) Uncontrolled cardiovascular or respiratory disease (2) Recent fractures (within the past 12 months) or severe localized back pain (3) Neurological or physical conditions that would prevent them from safely doing heavy resistance training (4) Active malignancies (5) A history of taking medications known to actively harm bone health (like chronic corticosteroids)

"The LIFTMOR trials used 85% of each person's 1-rep-max." Correct. There is no "standard" for "heavy". Unfortunately, for most people (esp women) who are over 70, 85% of their 1-rep-max will not likely be heavy enough to stimulate bone growth. So they will not be able to provide enough stress on their bones to increase their bmd.

If 85% of your 1-rep-max is heavy enough to stimulate your bones, that is great. I am just speaking from my experience with a lot of women over 70.

Plus how many people have access to a LIFTMOR/ONERO-style full-supervision for every session from a PT?

I am sorry you already fractured your mid-back. Dead-lifts are very dangerous to do with a pre-existing fracture to your mid-back. Most PTs would not allow their patients to do them. Exposing oneself to the risk of vertebral fractures is like playing Russian roulette. There are several people in this forum who have talked about the excruciation pain and disability that can be caused by a vertebral fracture.

I know a lot of people hate taking drugs but one cannot deny these results:

Evenity: Vertebral fractures: ≈73% decrease
Tymlos: Vertebral fractures: ≈86% decrease
Forteo: Vertebral fractures: ≈65% to 69% decrease
Prolia — Injected every 6 months: Vertebral fractures: ≈68% decrease
Reclast— Annual IV infusion: Vertebral fractures: ≈70% decrease
Fosamax — Oral weekly/daily: Vertebral fractures: ≈47% to 50% decrease

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@roseincalifornia Whoa! I had a minor strain injury in my mid-back, not a vertebral fracture! My spine T-score is -0.9. It is my other bones/T-scores that put me into osteoporosis.

If all one is routinely lifting is a 1 lb can of soup, then bone is going to be degrading. Even if one's maximum lift is 10 lbs, then working out with a bit over 8 lbs should benefit your bones according to my reading of the study. It may not be enough to GAIN bone from lifting 85% of such a low 1RM weight. I do agree that a hypothetical person in that condition most likely needs the pharmaceuticals ASAP and needs the full supervision for any lifting.

I plan to start anabolic meds if I do not get enough benefit from HRT and lifting after 2 years when I would be 68. If my spine was -3.x then I think that I would start meds now. I am 10 months into the HRT + lifting and monitoring BTMs along the way. If my Bone Turnover Markers stop looking good then I plan to start the meds before 2 years is up.

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Profile picture for gravity3 @gravity3

@bones2024

if you posted a question about this as a new discussion under Osteoporosis I wonder if you would get more response.

What is your endocrinologist offering as a next step since you do not want Prolia.

If you part of the OsteoBoston group...no cost...you can send an email to the whole group. To join email the group moderator/planner at osteoboston@gmail.com

It is still my understanding that tymlos needs to be followed by an antiresorptive medication like Prolia, reclast or fosomax/alendronate
But others probably have more recent thoughts than I.

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@gravity3
Thanks so much for the advice!

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My understanding about exercise and osteoporosis has been informed by what seems to be a relatively new development that I call 'impact' exercises. Some of these involved jumping but if you have knee problems there are some lower level 'impact' exercises.

Impact exercises target hip density, notoriously difficult to improve with meds. It involves a concept called osteogenesis, telling/stimulating your body to produce new bone. Have no idea how appropriate this might be for osteoporosis of the spine.

Here are a couple of links:
https://youtu.be/e_Tr8AeULzI (Will Harlow. A British no-nonsense physio who focuses on the over 50 crowd. His exercises eliminated some knee and hip pain I was experiencing.

https://youtu.be/QGKvRwf-bnc (2 Canadian docs who try to have fun when discussing medical info; their humor has been an acquired taste)

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Profile picture for kfhoz @kfhoz

@roseincalifornia Whoa! I had a minor strain injury in my mid-back, not a vertebral fracture! My spine T-score is -0.9. It is my other bones/T-scores that put me into osteoporosis.

If all one is routinely lifting is a 1 lb can of soup, then bone is going to be degrading. Even if one's maximum lift is 10 lbs, then working out with a bit over 8 lbs should benefit your bones according to my reading of the study. It may not be enough to GAIN bone from lifting 85% of such a low 1RM weight. I do agree that a hypothetical person in that condition most likely needs the pharmaceuticals ASAP and needs the full supervision for any lifting.

I plan to start anabolic meds if I do not get enough benefit from HRT and lifting after 2 years when I would be 68. If my spine was -3.x then I think that I would start meds now. I am 10 months into the HRT + lifting and monitoring BTMs along the way. If my Bone Turnover Markers stop looking good then I plan to start the meds before 2 years is up.

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@kfhoz

I apologize. When you mentioned "injury", I assumed it was a fracture. I also assumed since you were explaining how much you wrecked deadlifting, that you had spinal osteoporosis. I am glad you do not. Your spine T-score of -0.9 is really good, and being able to deadlift 100lb is amazing!

I am only saying that the LIFTMOR study does not apply to many older women (70+, and sadly some who are even younger) who have not been exercising for decades, or only lightly exercising. Sarcopenia (muscle atrophy) starts around age 30, and increases substantially at menopause, and then even more at 65+. Women lose 8-10% of their muscle mass per decade by age 65+. For most average women who are 75+, have never lifted weights, their 1-rep-max is not going to be high enough that lifting 85% will not put enough pressure on their bones to increase their bone density. Maybe after lifting steadily for 1 year with a PT they can build up enough strength so their 1-rep-max is high enough, but by then their bone quality has deteriorated even more. The results of the LIFTMOR study are not applicable to these people.. Plus people who are 70+ are out of the age range of the participants of the study.

I am not saying someone with osteoporosis should not lift weights. Getting stronger is very important as we age. But people with osteoporosis should not think that just lifting weights (and supplements) will cure them of osteoporosis, especially if their t-score is less than -3.0.

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Profile picture for roseincalifornia @roseincalifornia

@kfhoz

I apologize. When you mentioned "injury", I assumed it was a fracture. I also assumed since you were explaining how much you wrecked deadlifting, that you had spinal osteoporosis. I am glad you do not. Your spine T-score of -0.9 is really good, and being able to deadlift 100lb is amazing!

I am only saying that the LIFTMOR study does not apply to many older women (70+, and sadly some who are even younger) who have not been exercising for decades, or only lightly exercising. Sarcopenia (muscle atrophy) starts around age 30, and increases substantially at menopause, and then even more at 65+. Women lose 8-10% of their muscle mass per decade by age 65+. For most average women who are 75+, have never lifted weights, their 1-rep-max is not going to be high enough that lifting 85% will not put enough pressure on their bones to increase their bone density. Maybe after lifting steadily for 1 year with a PT they can build up enough strength so their 1-rep-max is high enough, but by then their bone quality has deteriorated even more. The results of the LIFTMOR study are not applicable to these people.. Plus people who are 70+ are out of the age range of the participants of the study.

I am not saying someone with osteoporosis should not lift weights. Getting stronger is very important as we age. But people with osteoporosis should not think that just lifting weights (and supplements) will cure them of osteoporosis, especially if their t-score is less than -3.0.

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@roseincalifornia
And if your tscore is -4.8 to -5.1 …weight can be a disaster let alone heel jumps.
Maybe there will be more data as they move up the age group studies

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Profile picture for osteopatient2026 @osteopatient2026

@roseincalifornia
And if your tscore is -4.8 to -5.1 …weight can be a disaster let alone heel jumps.
Maybe there will be more data as they move up the age group studies

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@osteopatient2026

Yes, I have heard about people fracturing bones in their feet when they tried jumping!

Osteoporosis affects all the bones in our bodies. Targeted weightlifting only benefits a small set of bones in our body, if one is even able to lift heavy enough. DEXA scans only report on the lumbar spine the hips and the femur neck. People also fracture wrist, arms, ribs etc....

Osteoporosis drugs strengthen the entire skeletal system.

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Thank you for sharing. I feel the same as you do in that I am afraid to take ANYTHING at all in the realm of osteoporosis medications. I am sorry that you have had so many fractures but I admire your courage and your faith filled attitude. This life is only temporary as you said. I myself am so prone to side effects that I feel almost certain that those medications would be too much for me. I take a lot of vitamins in the hopes that I can stay stable. My score is severe for this disease but I still have hope, maybe unrealistically that I can turn it around. My goals are to increase exercise, go to bed early, get outside more, and stay on a better diet because of my digestive problems. I take each day by the grace of God and hope for the best. God bless you in all your endeavors and my prayers go with you. (PS: Might increase the boron too!)

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