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.

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researchmaven | @researchmaven | May 6 8:26am
In reply to @researchmaven "I haven't lost any height of note, maybe 1/4 inch. No fractures at 69. I have..." + (show)
@researchmaven

I haven't lost any height of note, maybe 1/4 inch. No fractures at 69. I have switched from calcium supps to Lactaid milk for my calcium dose and my specialist likes that, saying that natural food sources are preferred.

Another, unrelated specialist notes that studies show that OTC supplements (unregulated) often are tainted or don't have the ingredients advertised...and they can be hard on the liver/kidneys. He went to MIT and Johns Hopkins, and is very scientific, so I listened to him on this.

As far as my osteo medication goes, my specialist wants me to continue with bisphosphonates (Atelvia). I just came off a one-year "holiday" from it and am supposed to go back on it. I am meeting with my specialist to go over the newer alternatives to bisphosphates, like Prolia. I will update my post (if I can locate it) after this May 13 appt.

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Oh, and my osteo is "severe." One tackless technician wondered how I could walk with it being so bad, and that was ten years ago. So it is more complex than a scan. Don't fret.

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2 replies
mayblin | @mayblin | May 6 8:47am
In reply to @researchmaven "Oh, and my osteo is "severe." One tackless technician wondered how I could walk with it..." + (show)
@researchmaven

Oh, and my osteo is "severe." One tackless technician wondered how I could walk with it being so bad, and that was ten years ago. So it is more complex than a scan. Don't fret.

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Hi @researchmaven if your osteoporosis is “severe” as you said, why your endo is not considering an anabolic for you? You could certainly benefit from getting some quality new bones built, especially you were on atelvia and had a holiday from it.

Why would prolia be considered here?

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1 reply
windyshores | @windyshores | May 6 10:03am
In reply to @mayblin "Hi @researchmaven if your osteoporosis is “severe” as you said, why your endo is not considering..." + (show)
@mayblin

Hi @researchmaven if your osteoporosis is “severe” as you said, why your endo is not considering an anabolic for you? You could certainly benefit from getting some quality new bones built, especially you were on atelvia and had a holiday from it.

Why would prolia be considered here?

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I have the same concern as @mayblin. If your osteoporosis is severe, I would think you might need Forteo, Tymlos or Evenity- bone builders.

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ripley | @ripley | May 6 11:36am
In reply to @researchmaven "Oh, and my osteo is "severe." One tackless technician wondered how I could walk with it..." + (show)
@researchmaven

Oh, and my osteo is "severe." One tackless technician wondered how I could walk with it being so bad, and that was ten years ago. So it is more complex than a scan. Don't fret.

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Would you mind sharing your DEXA scores?

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ripley | @ripley | May 6 4:04pm

UPDATE TO MY POST: Met with my endocrinologist last week and my treatment options appear to be limited:
Dr does not recommend Forteo or Tymlos because my blood calcium levels are on the high end of normal and these drugs usually raise blood calcium levels.

He mentioned Evenity but didn't recommend it because it's a newer drug and I'd have to drive to his office, one hour away, once a month for injections.

He still recommends Reclast, which I'm very reluctant to take for two reasons. I have fibromyalgia with daily pain, often severe, so I don't want to take anything that will cause more pain. I’ve read 55% of Reclast users experience bone pain and 25-30% have muscle pain. Also, I don’t want to take something I can't stop if I have bad side effects. We talked about a 3mg dose, I can't remember if that was to test how I react to it or if I could continue getting the low doses, but more often.

Then there is Fosamax, which Dr said may have a lower risk of aggravating symptoms and indicate if I would be more likely to tolerate Reclast. I had some esophagus issues a couple years ago which cleared up but are still being watched. I’d want to check with my Gastro Dr before taking it. Since that issue arose two years ago, I've been taking a PPI, which I think may have contributed to my worsening DEXA numbers. I'm trying wean off the PPI and transition to famotidine. I’m also concerned about dental issues as I have a lot of crowns and in the last two years, had two root canals and needed one tooth pulled due to a cracked root.

I welcome any comments or suggestions.

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1 reply
researchmaven | @researchmaven | May 6 6:39pm

I will try to weigh in on your drug choice after I talk to my specialist on May 13.

Attached are my "severe" DEXA scores. As a reminder that I have only lost a quarter inch and have not fractured a bone.

Shared files

Dexa Statistics (Dexa-Statistics.pdf)

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1 reply
windyshores | @windyshores | May 6 7:05pm
In reply to @researchmaven "I will try to weigh in on your drug choice after I talk to my specialist..." + (show)
@researchmaven

I will try to weigh in on your drug choice after I talk to my specialist on May 13.

Attached are my "severe" DEXA scores. As a reminder that I have only lost a quarter inch and have not fractured a bone.

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@researchmaven your spine and forearm scores are not severe, and your hip is not osteoporotic.

@ripley my calcium before Tymlos was 10.3 (just over the line) and I did fine on it. I just didn't take calcium before Tymlos or during the two hours after.

I drive an hour for Evenity.

I really hope you do a bone builder and not Reclast or Fosamax. I saw a second endocrinologist for another opinion. That is always an option.

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2 replies
elizabethaames | @elizabethaames | May 6 7:26pm
In reply to @windyshores "It looks like your spine hasn't been great for awhile, and had a recent drop that..." + (show)
@windyshores

It looks like your spine hasn't been great for awhile, and had a recent drop that is significant. I think most of us would tell you that a bone builder would be best (Tymos, Forteo, Evenity). Reclast, Fosamax and Prolia are anti-resorptives, which means they increase density by lowering bone turnover, not by building new bone the way the other three do. I hope you can discuss this with your doctor.

Insurance companies like doctors to prescribe an anti-resorptive first (they are cheaper) but with low DEXA scores and/or fractures, your doctor can try to authorize a bone-builder.

You might want to read up on options (McCormick's "Great Bones" is one I like) or watch some videos (I like Ben Leder MD's video on Combinations and Sequencing on YouTube).

crossposted with @babs10 !

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helpful reply; I've been on Tymlos 1.5 years and am eager to find out my newest Dexa as I have to switch out after 2 yr marker this fall. I'm in the -3.3 range/spinal too...so am hoping for a big improvement; play pickleball almost daily and lift, etc. but have already lost 2" in height and I'm only 64! Appreciate the readings/video referrals...will get on it and be ready!

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1 reply
ripley | @ripley | May 6 8:59pm
In reply to @elizabethaames "helpful reply; I've been on Tymlos 1.5 years and am eager to find out my newest..." + (show)
@elizabethaames

helpful reply; I've been on Tymlos 1.5 years and am eager to find out my newest Dexa as I have to switch out after 2 yr marker this fall. I'm in the -3.3 range/spinal too...so am hoping for a big improvement; play pickleball almost daily and lift, etc. but have already lost 2" in height and I'm only 64! Appreciate the readings/video referrals...will get on it and be ready!

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With my low DEXA scores, I'm now afraid to do much physical activity for fear of fracture. I am thinking of getting a second opinion, but the wait to see any specialists is usually several months.

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2 replies
ripley | @ripley | May 6 9:05pm
In reply to @windyshores "@researchmaven your spine and forearm scores are not severe, and your hip is not osteoporotic. @ripley..." + (show)
@windyshores

@researchmaven your spine and forearm scores are not severe, and your hip is not osteoporotic.

@ripley my calcium before Tymlos was 10.3 (just over the line) and I did fine on it. I just didn't take calcium before Tymlos or during the two hours after.

I drive an hour for Evenity.

I really hope you do a bone builder and not Reclast or Fosamax. I saw a second endocrinologist for another opinion. That is always an option.

Jump to this post

My most recent serum calcium was 10.3 also (just under the line of 10.4 at my lab). Did you Dr do periodic blood tests to monitor your calcium while you were on Tymlos? Did you have any side effects from the Tymlos? I am considering getting a 2nd opinion, hopefully from an endocrinologist closer to me.

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