1. < Osteoporosis & Bone Health

Scared by latest DEXA showing severe osteoporosis. Need advice.

Posted by ripley @ripley, Apr 28 4:22pm

I'm a 73 year old woman diagnosed with osteoporosis in 2017. (I am petite, 5’2” and 112 lbs and have heard that may affect DEXA score accuracy.) Since 2017, my DEXA’s every 2 years stayed quite consistent. However, my latest DEXA shows a significant decrease in BMD, and it scares me.

2024 Total Hip: -2.7 (2021 -2.4, 2019 -2.3, 2017 -2.2)
2024 Femoral Neck: -3.0 (2021 -2.5, 2019 -2.7, 2017 -2.4)
2024 Lumbar Spine: -3.9 (2021 -3.2, 2019 - 3.3, 2017 -3.2)

I've never broken or fractured a bone. I take calcium, vitamin D and collagen peptide supplements every day, but have never been on any prescribed drugs for osteoporosis and especially would like to avoid bisphosphonates. I know my endocrinologist will pressure me to take something. At my last visit, he suggested Reclast. The many side effects of this drug concern me, especially lasting bone and muscle pain. I have fibromyalgia, so already have daily body pain, sometimes severe, so I worry about increased pain from a new drug and/or a fibro flare.

I think two reasons for my recent low DEXA scores is that two years ago I was diagnosed with fibromyalgia, which has limited my physical activity, and I started taking a daily PPI. I have tried to wean myself off the PPI, without success, but will try again. Also, for many years I've had a thyroid condition and have taken Synthroid.

Will I have to take some kind medication for my bones? I would appreciate any advice. I see my endocrinologist in two days.

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

windyshores | @windyshores | Apr 30 2:47pm
In reply to @gently "ripley, you don't have to follow Tymlos or Forteo with Reclast. A bone expert who advises..." + (show)
@gently

ripley, you don't have to follow Tymlos or Forteo with Reclast. A bone expert who advises me suggests(Actonel) risidronate--a daily or weekly pill with lower adverse event profile. He says risidronate clads to the bone less fiercely than Reclast zolendronate. And so would have less of a blunting on a second round or either Forteo or Tymlos.
Forteo and Tymlos have a slower loss of gains than other anabolics and (it is said) the loss is never greater than baseline.
Anyway you'd have two to three years to decide how to follow the anabolic. And there may be a slew of new choices by then.
I hope you have a good appointment. What ever you decide upon today with your endocrinologist, you can always change your mind. Remember to ask for bone markers.
We'll respect your choices and can't wait to hear.

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Alendronate and risidronate are not as potent as Reclast, which is a plus and a minus. They are bisphosphonates, like Reclast, but oral, not infused. The only caveat is that the former are hard to tolerate if you have GERD. I am hoping my more frequent lower dose Reclast can sort of mimic an oral regimen but it will avoid aggravating my GERD.

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1 reply
mayblin | @mayblin | Apr 30 2:59pm
In reply to @windyshores "Alendronate and risidronate are not as potent as Reclast, which is a plus and a minus...." + (show)
@windyshores

Alendronate and risidronate are not as potent as Reclast, which is a plus and a minus. They are bisphosphonates, like Reclast, but oral, not infused. The only caveat is that the former are hard to tolerate if you have GERD. I am hoping my more frequent lower dose Reclast can sort of mimic an oral regimen but it will avoid aggravating my GERD.

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Windy, it depends on what one wants to do in the future. I, for one, has put Reclast and fosamax to the last of my option list for right now, especially facing a very long term managemt period ahead of me.

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1 reply
windyshores | @windyshores | Apr 30 3:18pm
In reply to @mayblin "Windy, it depends on what one wants to do in the future. I, for one, has..." + (show)
@mayblin

Windy, it depends on what one wants to do in the future. I, for one, has put Reclast and fosamax to the last of my option list for right now, especially facing a very long term managemt period ahead of me.

Jump to this post

@mayblin how are you going to "lock in your gains"? Curious what alternatives to bisphosphonates you are considering. I cannot do orals.

The idea expressed by @gently that a weaker bisphosphonate might make bone building drugs more effective in the future is intriguing. If I did not have GERD, I would be asking my doctor about risendronate (which McCormick also mentioned) but would also about research on the choice between a strong drug like Reclast which is better for keeping gains vs using a less strong drug in order to benefit from future anabolics.

We have years ahead of us. Doctors and other experts haven't really answered questions on how we get through 10, 20, 25 years.

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1 reply
leeosteo | @leeosteo | Apr 30 3:27pm
In reply to @gently "leeosteo, I've been looking for an endocrinologist sufficiently curious to find out if a patient could..." + (show)
@gently

leeosteo, I've been looking for an endocrinologist sufficiently curious to find out if a patient could take Forteo forever.
I meant to write that three different physicians made three different suggestions. The endocrinologst treating me was intrigued by the concept and agreed to staggered use of Forteo. But at the end of the appointment said, "but only after 2 years of Forteo and 1 year of Reclast." I've only finished one year of Forteo. I have a year to find find someone or go rogue.
Forteo is my first pharmaceutical. I wasn't reluctant to take it, may have been eager facing possible fractures. I was quite surprised that it was such a friendly drug.
Mind, though, I haven't had a followup DXA. Could be the joke's on me. There could also be another better drug (or they'll find out that Evenity is senolytic or doubles brain size and power.) My plan is to stay on Forteo with pharmaceutical free breaks inbetween.
Sorry to be unclear.

.

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Oh, I see. So your current endo will follow the normal 2 yr Forteo w/1yr Reclast... then will consider another sequence of the same. I'm on Forteo now (in second month). My endo said her colleagues are now using Forteo past 2 yrs. I'm not sure how they're sequencing it. I'll ask next time I see her. Keep us all informed as to your DEXA results. Are you waiting until after two years of Forteo?

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gently | @gently | Apr 30 6:20pm

leeosteo, the prescribing endocrinologist was animated with the idea of Forteo alone. We had a lively about the possibilities. When I asked if he would follow me he said he would. He tried to bribe me with couple of free Tymlos pens, sent the script for Forteo.
He may be retiring. He may change his thinking. Since I can get Forteo in several countries without script, I 'm not dependent on approval. I'll rely more on bonemarkers than bone scans.

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mayblin | @mayblin | May 1 4:04pm
In reply to @windyshores "@mayblin how are you going to "lock in your gains"? Curious what alternatives to bisphosphonates you..." + (show)
@windyshores

@mayblin how are you going to "lock in your gains"? Curious what alternatives to bisphosphonates you are considering. I cannot do orals.

The idea expressed by @gently that a weaker bisphosphonate might make bone building drugs more effective in the future is intriguing. If I did not have GERD, I would be asking my doctor about risendronate (which McCormick also mentioned) but would also about research on the choice between a strong drug like Reclast which is better for keeping gains vs using a less strong drug in order to benefit from future anabolics.

We have years ahead of us. Doctors and other experts haven't really answered questions on how we get through 10, 20, 25 years.

Jump to this post

@windyshores I came to this site last winter to search for the answer of my puzzling deaxa results at 13mo FORTEO. Along the way I was searching for the path forward at the completion of FORTEO. You've given me valuable opinions and we discussed fosamax dosage form briefly. Posts by @teb broadened my view so much, I'd never thought HRT will be on my consideration list as I'm 10-11 years past menopause. Discussion with @gently was and has been eye opening and mind blowing... Comments from @gently re FORTEO's second round will be "as robust as first one" stuck in my mind ever since. @gently has the most unconventional thoughts toward op therapy, those thoughts may lead our way forward, for the better. Every op drug has its time and place. If we like a second round of Forteo, fosamax and reclast may not be the best candidates as a relay, for obvious reasons. The remaining antiresorptives? Reading thru literatures, with the exception of prolia, I think they are feasible and sensible, including HRT, maybe a SERM (a bit too weak thou).

Use a gentle one, @gently @windyshores, if you'd like to repeat another round of anabolic such as FORTEO.

Boniva has pill form and iv liquid. Residronate has delayed release form which might be friendlier to stomach. HRT provides the much needed estrogen to post menopausal women. The thinking about hrt is fast changing, we just need to figure out if it's suitable for us individually. So far 4 doctors that i consulted think I'm a candidate for it and I'm 11 years post menopause with a mild cad. The key is to stay on top of keeping our health in check.

With that said, those biphosphonates may not hold bone gains well in a longer term. I'm still actively reading and comparing them. With more and more ppl using them as relay meds for repeated anabolic treatments, the long term management of op will have a new landscape.

REPLY
1 reply
windyshores | @windyshores | May 1 5:57pm
In reply to @mayblin "@windyshores I came to this site last winter to search for the answer of my puzzling..." + (show)
@mayblin

@windyshores I came to this site last winter to search for the answer of my puzzling deaxa results at 13mo FORTEO. Along the way I was searching for the path forward at the completion of FORTEO. You've given me valuable opinions and we discussed fosamax dosage form briefly. Posts by @teb broadened my view so much, I'd never thought HRT will be on my consideration list as I'm 10-11 years past menopause. Discussion with @gently was and has been eye opening and mind blowing... Comments from @gently re FORTEO's second round will be "as robust as first one" stuck in my mind ever since. @gently has the most unconventional thoughts toward op therapy, those thoughts may lead our way forward, for the better. Every op drug has its time and place. If we like a second round of Forteo, fosamax and reclast may not be the best candidates as a relay, for obvious reasons. The remaining antiresorptives? Reading thru literatures, with the exception of prolia, I think they are feasible and sensible, including HRT, maybe a SERM (a bit too weak thou).

Use a gentle one, @gently @windyshores, if you'd like to repeat another round of anabolic such as FORTEO.

Boniva has pill form and iv liquid. Residronate has delayed release form which might be friendlier to stomach. HRT provides the much needed estrogen to post menopausal women. The thinking about hrt is fast changing, we just need to figure out if it's suitable for us individually. So far 4 doctors that i consulted think I'm a candidate for it and I'm 11 years post menopause with a mild cad. The key is to stay on top of keeping our health in check.

With that said, those biphosphonates may not hold bone gains well in a longer term. I'm still actively reading and comparing them. With more and more ppl using them as relay meds for repeated anabolic treatments, the long term management of op will have a new landscape.

Jump to this post

My doc has mentioned doing Tymlos or Evenity after Reclast. The loss of effectiveness is real but not drastic, at least from the charts I have seen.

I cannot tolerate oral bisphosphonates due to an esophagus condition. I can't do hormonal treatment because I had hormonal breast cancer.

I like this forum because there are creative ideas floating around and the one provided by @gently of doing a gentler bisphosphonate makes sense. I look forward to hearing results.

I also like this forum because we have different strengths and vulnerabilities and my only choice right now is low dose Reclast, which I hope will mimic the "gentleness" of orals. (Love the @gently and gentleness!)

@mayblin you have contributed a lot of intelligent thoughts and research as well. Grateful for you and @gently. 🙂

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wendyi | @wendyi | May 1 7:06pm

Does medicare cover the cost of getting a TBS score (percentage risk of fracture) by converting the DEXA? have Dexa scheduled but want to ask for a TBS score too.
Thanks so much
Wendy

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lynnsanitt3 | @lynnsanitt3 | May 1 10:10pm

Hi i was just diagnose with spinal osteoporosis . My question is changing up what I eat.Where can I find some sort of food and drink list. I know I have a lot to learn but if anyone can show me the way so to speak that would be great thx

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patjack2 | @patjack2 | May 3 10:53am

I have read that there is a better scan than a Dexa Scan. It is not widely distributed. I just can't remember the name of it. I've read that it gives a better marker for the level of osteoporosis
thanks

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