61 years old, very healthy and active, past competitive runner

Posted by lisawa @lisawa, Oct 29 2:44pm

I am 61, very healthy, past competitive distance runner that did not have consistent periods until in my 20’s during prime bone growth. Subsequently , my tbsscores continue to drop. L1-L4 in 2019 ( -2.3) now 2024( -2.8) . Left hip 2019 (-2.0) now 2024 (-2.5). Right hip 2019 (-2.0) now (-2.1) . Same dexa machine. Dr said I was mod/ high risk of vertebral fracture and wants me to consider Tymlos. I am very scared to start any traditional therapy because of side effects, cancer risk, and rebound bone loss. What does this look like in 5 years? 10 years? I have 2 grandbabies on the way and plan to be super active with them! Please share your knowledge, wisdom and experience. Thanks

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lisawa, you are in the prime bone loss time for women. Your doctor wants you to consider one of the best medications to both strenghten your bones and increase bone density. Both Forteo and Tymlos leave the body quickly withing 24 hours which limits the amount of suffering from side effects. You could have reactions to either. But some patients don't. The cancer warning has been removed from Tymlos and there isn't rebound. You do have to take something after Tymlos because you lose the gain, it isn't rapid loss as with the alternative Prolia, and Evenity. Then you can cycle back to Tymlos or to Forteo.
I only have experience with Forteo. I'm almost at two years and have been offered a third. I've had decent gains, except in my fingernails where the gains have been exceptional.
Congratulations on your coming grandbabies and the world of delight.
Bless your choice with luck.

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I know that "spinal fracture" sounds very serious, and of course it can be. But, don't be petrified. I am 65. 18 months ago, I got a compression fracture in my spine due to osteoporosis (didn't know it at the time; I'm on Tymlos now.)

So what was it like? I had to wear a back brace for a few weeks while it healed. Sure, it was annoying, hard to move around, sleeping was annoying, but I managed. I wasn't homebound the entire time, either. It healed fine in a month or so, I'm not any shorter, and since then, I resumed going to the gym and doing moderate running.

I am not diminishing the experiences of others who have had multiple fractures, not at all. It can absolutely be terrible and chronic. I just want to point out that "spinal fracture" can conjure up *immediate* thoughts of total disability. Like any other injury, there are degrees of seriousness.

Don't hesitate to treat it. Just jump in! Now is the time. You'll be ok.

BTW, I am not due for a DEXA for another couple of months, but when I started, I was -3.3, and I've been doing all my regular activities. Hopefully I'll have a better number on the next one. Also remember that there's a difference between bone density and bone strength, and DEXA only measures the former.

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@gently

lisawa, you are in the prime bone loss time for women. Your doctor wants you to consider one of the best medications to both strenghten your bones and increase bone density. Both Forteo and Tymlos leave the body quickly withing 24 hours which limits the amount of suffering from side effects. You could have reactions to either. But some patients don't. The cancer warning has been removed from Tymlos and there isn't rebound. You do have to take something after Tymlos because you lose the gain, it isn't rapid loss as with the alternative Prolia, and Evenity. Then you can cycle back to Tymlos or to Forteo.
I only have experience with Forteo. I'm almost at two years and have been offered a third. I've had decent gains, except in my fingernails where the gains have been exceptional.
Congratulations on your coming grandbabies and the world of delight.
Bless your choice with luck.

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Your scores aren't terrible yet @lisawa. I have kept a chart of my DEXA's since 2001 (!) and they jump around quite a bit, but since both your left hip and spine got worse and by -.5 (statistically significant with -.5 change) I get the concern.

I never know what to think about situations like yours. If I were you I would consult with Dr. Keith McCormick, the chiropractor expert on osteoporosis who wrote "Great Bones." Many of us consult with him and you have time to wait for an appointment. He also wrote "A Whole Body Approach to Osteoporosis." The question is, when to start meds, what meds, and what order.

Will your insurance cover an anabolic like Forteo or Tymlos with scores like that and no fractures? I hope noone will convince you to do Prolia- very risky to get off of it and people post on here about multiple fractures when they stop (even after gains while on it). If you do Reclast or Fosamax, which are often used for early osteoporosis, they are known to reduce the effectiveness of anabolics, so just be aware.

The problem we all face is how to extend treatment over time. Each med has a time limit. We need to sequence them strategically for maximum effectiveness and also think about time limits. So Tymlos is two years, Forteo can be longer but effectiveness may not extend past 18-24 months. Reclast is limited to 3-5 years to avoid atypical femur fracture or jaw necrosis. Evenity is one year.

So hypothetically (not likely with your scores) at 61 you could do two years of Tymlos, one year Evenity, 3 years Reclast . That takes you to 67-and then what? That is what we are all dealing with. Hopefully a long drug holiday whatever you do.

Talk to your endo, maybe get a copy of "Great Bones" and hope you can consult with McCormick. Margaret Martin at melioguide. com is the best for exercise. Above all take your time with decisions! Your scores aren't bad, it's just that their density is declining!

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I’m very curious if I can take tymlos after Evenity? I have been back and forth between tymlos and Evenity and currently have landed on Evenity due to higher and faster gains in spine. Also I have had squamous cell cancer and didn’t want to take a chance but understand elongating treatment with anabolics. Any advice or anyone who did Tymlos post Evenity with success?? I’m scheduled to begin Evenity in Nov so there is time to change my mind. I’ve been on a roller coaster of decision making!

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@osteoresearch

I’m very curious if I can take tymlos after Evenity? I have been back and forth between tymlos and Evenity and currently have landed on Evenity due to higher and faster gains in spine. Also I have had squamous cell cancer and didn’t want to take a chance but understand elongating treatment with anabolics. Any advice or anyone who did Tymlos post Evenity with success?? I’m scheduled to begin Evenity in Nov so there is time to change my mind. I’ve been on a roller coaster of decision making!

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@osteoresearch I did Tymlos first, then Evenity (just 4 months). Most people seem to do it in that order. Not sure what the research says on this. Please share if your doctor has any info on this! Evenity is so new (2019) that lots of things are still unknown or unproven by studies. Evenity is anti-resorptive for the last half, at least, and Tymlos was anabolic for at least 18 months in my case. I would investigate the mechanism of each with your doctor in order to decide.

I had breast cancer grade 3 and had no concerns about Tymlos. If I were stage 4, I would avoid it for sure. In that case I would do Reclast/Zometa or even Prolia/Xgeva. Dose squamous cell cancer spread to bones the way breast cancer does?

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@windyshores

@osteoresearch I did Tymlos first, then Evenity (just 4 months). Most people seem to do it in that order. Not sure what the research says on this. Please share if your doctor has any info on this! Evenity is so new (2019) that lots of things are still unknown or unproven by studies. Evenity is anti-resorptive for the last half, at least, and Tymlos was anabolic for at least 18 months in my case. I would investigate the mechanism of each with your doctor in order to decide.

I had breast cancer grade 3 and had no concerns about Tymlos. If I were stage 4, I would avoid it for sure. In that case I would do Reclast/Zometa or even Prolia/Xgeva. Dose squamous cell cancer spread to bones the way breast cancer does?

Jump to this post

Yes it can spread to bones. Also, my mother had breast cancer and it spread to her bones and she died at 49. I don't have direct evidence because I was only 17 but I've been told she was on the synthetic estrogen (premarin with no progresterone) after hysterectomy and was most likely the cause (this was in the 1970's). I do not have the genetic marker for breast cancer.
It is very confusing for me to decide which way to go. I am 63 this month and had pretty much decided on Evenity. But I keep waffling........mainly because I don't especially want to do bisphosphonates. I am certain about doing an anabolic, resistance strength training, and balance exercises. The rest is unclear.....

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@gently

lisawa, you are in the prime bone loss time for women. Your doctor wants you to consider one of the best medications to both strenghten your bones and increase bone density. Both Forteo and Tymlos leave the body quickly withing 24 hours which limits the amount of suffering from side effects. You could have reactions to either. But some patients don't. The cancer warning has been removed from Tymlos and there isn't rebound. You do have to take something after Tymlos because you lose the gain, it isn't rapid loss as with the alternative Prolia, and Evenity. Then you can cycle back to Tymlos or to Forteo.
I only have experience with Forteo. I'm almost at two years and have been offered a third. I've had decent gains, except in my fingernails where the gains have been exceptional.
Congratulations on your coming grandbabies and the world of delight.
Bless your choice with luck.

Jump to this post

Thank you so much for your advice.

REPLY
@windyshores

Your scores aren't terrible yet @lisawa. I have kept a chart of my DEXA's since 2001 (!) and they jump around quite a bit, but since both your left hip and spine got worse and by -.5 (statistically significant with -.5 change) I get the concern.

I never know what to think about situations like yours. If I were you I would consult with Dr. Keith McCormick, the chiropractor expert on osteoporosis who wrote "Great Bones." Many of us consult with him and you have time to wait for an appointment. He also wrote "A Whole Body Approach to Osteoporosis." The question is, when to start meds, what meds, and what order.

Will your insurance cover an anabolic like Forteo or Tymlos with scores like that and no fractures? I hope noone will convince you to do Prolia- very risky to get off of it and people post on here about multiple fractures when they stop (even after gains while on it). If you do Reclast or Fosamax, which are often used for early osteoporosis, they are known to reduce the effectiveness of anabolics, so just be aware.

The problem we all face is how to extend treatment over time. Each med has a time limit. We need to sequence them strategically for maximum effectiveness and also think about time limits. So Tymlos is two years, Forteo can be longer but effectiveness may not extend past 18-24 months. Reclast is limited to 3-5 years to avoid atypical femur fracture or jaw necrosis. Evenity is one year.

So hypothetically (not likely with your scores) at 61 you could do two years of Tymlos, one year Evenity, 3 years Reclast . That takes you to 67-and then what? That is what we are all dealing with. Hopefully a long drug holiday whatever you do.

Talk to your endo, maybe get a copy of "Great Bones" and hope you can consult with McCormick. Margaret Martin at melioguide. com is the best for exercise. Above all take your time with decisions! Your scores aren't bad, it's just that their density is declining!

Jump to this post

Thank you ! This is very helpful.

REPLY
@gently

lisawa, you are in the prime bone loss time for women. Your doctor wants you to consider one of the best medications to both strenghten your bones and increase bone density. Both Forteo and Tymlos leave the body quickly withing 24 hours which limits the amount of suffering from side effects. You could have reactions to either. But some patients don't. The cancer warning has been removed from Tymlos and there isn't rebound. You do have to take something after Tymlos because you lose the gain, it isn't rapid loss as with the alternative Prolia, and Evenity. Then you can cycle back to Tymlos or to Forteo.
I only have experience with Forteo. I'm almost at two years and have been offered a third. I've had decent gains, except in my fingernails where the gains have been exceptional.
Congratulations on your coming grandbabies and the world of delight.
Bless your choice with luck.

Jump to this post

I appreciate your knowledge that you share here. I was on Forteo for 24 months, had a reaction to one shot of Prolia in follow up to that, so was on Reloxafine for 5 yrs before bone density showed decline. I have been waiting for Pharma care to approve Evenity, as I cannot afford $800 a month. Initial recommendation by new Endocrinologist was to go back on Forteo, but when I called the Forteo nurse I had through the study phase, she told me twice "you need to look at alternatives". I am so confused. I have a prescription cleared to start the Forteo. Wondering now if I should just go ahead with that. I did not realize Evenity was like Prolia and did not maintain gains. What do they advise you to use after Forteo? My spine can no longer be read, as it has 13 previous fractures. My hip score is -3.5

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I wonder why the nurse said to avoid Forteo again. Can you get a second opinion?

I have 7 spinal fractures and my femur neck is still -3.7. Tymlos got my spine from -3.6 to -2.5 and hip from -3.3 to -2.9. I did Tymlos then 4 months Evenity. If I were you I would do Tymlos then Evenity.

Evenity is not like Prolia in terms of rebound. Prolia stands alone in that regard. We will naturally lose bone after all the other meds but not via a rebound like Prolia's. Prolia suppresses osteoclasts and they come rushing back in large numbers: that is the mechanism for rebound. No matter what you take, as protocols stand now, you will need a bisphosphonate. Ugh!

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