Newly diagnosed, requesting feedback on meds

Posted by lrattner @lrattner, Jul 13 1:54pm

First post and newly diagnosed. 66 year old female, fairly active not on any meds for any conditions except for NSAIDs PRN. I’ve been reading here for quite some time when I was diagnosed 2 years ago with osteopenia and am grateful for how much I’m learning. I was hoping to avoid osteoporosis diagnosis so implemented major diet and exercise changes over the last 2 years. I’ve lost 60lbs, walk 3 miles 5 to 6 times per week and really upped my calcium from food as well as protein intake. Didn't do weights b/c of back issues. I’m sure these were all beneficial but, still dx'd with osteoporosis. Sigh. I’m in need of feedback regarding my Endo’s medication recommendations. I realize this is NOT medical advice. My Dexa T score in spine is -2.5 and hip -1.2. I have 2 compression fractures in my spine (one “old”, one new), have spondylolisthesis at L4-L5 and L5-S1 for which I am trying to avoid surgery, have broken both wrists and both ankles over the past few years, and also have GERD. Endo did a deep dive with testing to rule out secondary causes. Parathyroid normal and no other bone diseases. CTx 505, Pn1P 50, serum calcium 10.2, Vitamin D 46. Dr wants me to take Fosamax. I’ve read that the order in which you do meds is important and that starting with Tymlos or an anabolic is preferable to an antiresorptive. I realize my T score is not that severe but with fractures and GERD I’m wondering what to do? I really don’t want to take any meds but definitely do NOT want this to get worse! Any thoughts?

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

Tymlos or Forteo before Fosamax is definitely the way to go.

This is good information (and this person often posts here.) He's made some really easy-to-understand videos.

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Profile picture for njx58 @njx58

Tymlos or Forteo before Fosamax is definitely the way to go.

This is good information (and this person often posts here.) He's made some really easy-to-understand videos.

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Thanks so much! This is so helpful!

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I echo the recommendation above to look into an anabolic medication instead of starting with Fosamax. With that many fractures, you would be classified as having severe osteoporosis and Fosamax is not your first choice.

I’d also recommend seeing an endocrinologist who specializes in osteoporosis for your care.

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Re: GERD- I developed severe acid reflux after month 9 of being on Fosamax. It took over year to really get in control working with a GI doctor. I did take the Fosamax exactly as directed, I did have gains in my spine to osteopenia , hips remained stable. I switched to Reclast 9/24 and will have another infusion 9/25.

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Has anyone tried Actinol? I’ve been on a weekly pill for 2 months with absolutely no side effects!

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I am not a doctor but Your Dexa scores do not appear to reflect the severity of your symptoms and fractures. YOu have amde major changes in your life toward health and I applaud your dedication to improve your wellbeng. BUt you may need more help.
.. I would recommend a complete workup to reveiw diet, lifestyle medical history - checking for systemic inflamation, GI issues as well as hypersensitities. Past steriod use??? or cancer exposure? medication use?? Even though you said you were checked for bone dieases, did the docs do a complete Bone dysplasia genetics panel?
Purchase the book ' Great Bones ' by Dr Keith McCormick and read it cover to cover. It is excellent. THis may shine light on areas that need looked into for your particluar situation.
I agree that an anabolic med may be your best choice rather than a reasportive. You need to build and strenghten, Try to make peace with the fact that meds are needed - they are a life saver for many of us. Sending positive energy for you to find the best path forward in health and happinness

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@dmshope - Sorry to hear about your osteoporosis diagnosis. Yeah it sucks. As @njx58 mentioned, I did put together a presentation just for people like you new to osteoporosis https://youtu.be/OVRiiyHXeh8 .

If you didn't have any fractures, based on your T-Scores, I too would say Fosamax would be a solid choice (except for the GERD). But with the past fractures, I strongly recommend an osteoanabolic (bone forming agent) like Tymlos, Evenity or Forteo to build back some bone structure before moving to a anti-resorptive like Fosamax. I would lean toward Tymlos though any of the three would probably work well.

Good luck!

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Profile picture for Michael Lavacot @michaellavacot

@dmshope - Sorry to hear about your osteoporosis diagnosis. Yeah it sucks. As @njx58 mentioned, I did put together a presentation just for people like you new to osteoporosis https://youtu.be/OVRiiyHXeh8 .

If you didn't have any fractures, based on your T-Scores, I too would say Fosamax would be a solid choice (except for the GERD). But with the past fractures, I strongly recommend an osteoanabolic (bone forming agent) like Tymlos, Evenity or Forteo to build back some bone structure before moving to a anti-resorptive like Fosamax. I would lean toward Tymlos though any of the three would probably work well.

Good luck!

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@lrattner, I second the choice of Tymlos, considering past fractures history.

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Profile picture for dmshope @dmshope

I am not a doctor but Your Dexa scores do not appear to reflect the severity of your symptoms and fractures. YOu have amde major changes in your life toward health and I applaud your dedication to improve your wellbeng. BUt you may need more help.
.. I would recommend a complete workup to reveiw diet, lifestyle medical history - checking for systemic inflamation, GI issues as well as hypersensitities. Past steriod use??? or cancer exposure? medication use?? Even though you said you were checked for bone dieases, did the docs do a complete Bone dysplasia genetics panel?
Purchase the book ' Great Bones ' by Dr Keith McCormick and read it cover to cover. It is excellent. THis may shine light on areas that need looked into for your particluar situation.
I agree that an anabolic med may be your best choice rather than a reasportive. You need to build and strenghten, Try to make peace with the fact that meds are needed - they are a life saver for many of us. Sending positive energy for you to find the best path forward in health and happinness

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Thanks so much for your thoughtful response. I’m meeting with my Dr in a few weeks for a follow up to discuss meds and some of the questions you mentioned. I’m hopeful!

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Profile picture for Michael Lavacot @michaellavacot

@dmshope - Sorry to hear about your osteoporosis diagnosis. Yeah it sucks. As @njx58 mentioned, I did put together a presentation just for people like you new to osteoporosis https://youtu.be/OVRiiyHXeh8 .

If you didn't have any fractures, based on your T-Scores, I too would say Fosamax would be a solid choice (except for the GERD). But with the past fractures, I strongly recommend an osteoanabolic (bone forming agent) like Tymlos, Evenity or Forteo to build back some bone structure before moving to a anti-resorptive like Fosamax. I would lean toward Tymlos though any of the three would probably work well.

Good luck!

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Thanks! Another poster shared your video and it was incredibly helpful! I appreciate your comprehensive explanations, especially about the differences in outcomes.

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