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.

researchmaven | @researchmaven | May 7 12:03am
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.

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Windyshores -- Thank you -- I just took the tech's word for it that I was a basket case. And I appreciate the advice a great deal!

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gently | @gently | May 7 6:03am
In reply to @ripley "UPDATE TO MY POST: Met with my endocrinologist last week and my treatment options appear to..." + (show)
@ripley

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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@ripley,
Foreo raises calcium levels transciently, peaking at a maximum increase of .4mg/dl two hours after the injection, returning to normal after four hours. Normal calcium levels don't preclude its use. Even if the use of Forteo raised your levels to above 10.3mg/dl for the temporary peak, it would be harmless.
You might prefer to check calcium levels more frequently during Forteo use, and adjust D3 supplementation accordingly, over taking Reclast. Not that you can write your own prescription. I'd want a second opinion.

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windyshores | @windyshores | May 7 6:24am
In reply to @ripley "My most recent serum calcium was 10.3 also (just under the line of 10.4 at my..." + (show)
@ripley

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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@ripley I believe I was tested every 6 months. My doctor was not concerned about my calcium at all. It is always 10.2-10.3 even if I go a day or two without supplements or dairy. I did not have problems with calcium on Tymlos. Any rise in calcium does not last long, as mentioned above.

I do have low blood pressure, used a blood pressure cuff and hydrated, ate salty things (and avoided calcium) before the shot.

I had excellent gains and so far Tymlos has been the most tolerable med for me.

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windyshores | @windyshores | May 7 6:42am
In reply to @ripley "With my low DEXA scores, I'm now afraid to do much physical activity for fear of..." + (show)
@ripley

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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@ripley maybe you could see a physical therapist to feel safe about moving. I walk and do tai chi, but avoid heavy lifting and twisting. A PT taught me safe movements to do things like lifting from the ground. I learned to turn my body without twisting. etc. Margaret Martin at melioguide.com is helpful too. She also put out a book.

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awfultruth | @awfultruth | May 7 11:45am
In reply to @ripley "With my low DEXA scores, I'm now afraid to do much physical activity for fear of..." + (show)
@ripley

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.

Jump to this post

@ripley You are getting great advice here in this thread. Your docs advice to do Reclast as the first thing to do is not good advice imo. With one of the anabolic bone building meds you might get important improvement in your lumbar spine. With Reclast you are mostly stopping further loss. Why settle for that? I get being afraid of physical activity. I'm very physically active but I changed some of the things I was doing and I cut out a couple of things I love but decided were too risky. You can be active it just takes some learning about what's being safe and what isn't.

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njhornung | @normahorn | May 7 11:55am

Be careful when overdoing giving advice as we do not know all of a person's medical condition. The anabolics may be counter indicated for me so I may have to resort to ReClast

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windyshores | @windyshores | May 7 7:53pm

@normahorn thank you for that wise advice. Not only might someone not be able to take an anabolic but some people who post on here have mild osteoporosis and might benefit from holistic methods or even bisphosphonates . Others cannot afford anabolics and insurance can be difficult. Another member shared a video with me by a doctor in Seattle and he was more positive about bisphosphonates than some other sources. I liked his presentation. I wish I could remember his name.

I have lately tried not to do rote responses about doing anabolics first unless I remember the poster's previous posts, and often I don't. I think responses should be based on our own experiences anyway, not "advice," but it is easy to blur the two at times.

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researchmaven | @researchmaven | May 13 12:07pm
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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Well, my May 13 appointment came and went with my osteo specialist, all without discussing alternatives to Atelvia.

However, I think she wants me to stay on Atelvia if my gut issues don't get in the way (my gut sensitivities seem to have worsened during my one-year drug holiday from it) and unfortunately I took a gastro drug a month ago that really seems to have hurt my gut.

I am to wait two months for my gut to normalize before trying Atelvia after that drug holiday.

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