Significant osteoporosis: I need a bone plan

Posted by heyhey @heyhey, Nov 15, 2020

60 y/o , fit and active (I thought) but my first bone scan showed osteoporosis in spine (-3.3). Want to start Evenity, Tyblos, or Forteo. Its really the first health issue I've had in my life, and I'm kind of stumped. How can I find reliable third party research into their relative risks & efficacy -- only research I can find online is done by the companies themselves.

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@tsc

Hi @catluvr99, it took a couple of days for the Medimaps group to respond, but they did. I think the study of TBS I read showed that 30% of the study participants who were diagnosed did not have osteoporosis. I got my diagnosis Of osteoporosis after a year of being sidelined from strength training because of an autoimmune disorder that made it impossible to move without excruciating pain. Prior to COVID, I was doing Judo, taking hard falls and doing many of the moves and exercises that can cause spinal fractures. So I secretly think I don't have it, but I follow all the protocols anyway just in case I do.
I hope you have success in your quest for a TBS.

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Oh....I think you're saying a study showed that is possible for the TBS to show that I'm in fact *better off* than my DXA showed. Was it that medimaps group that showed you the study/link to the study? Sorry that I've gotten confused. I've been in a state of confusion ever since seeing my DXA report in May.

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@catluvr999

Oh....I think you're saying a study showed that is possible for the TBS to show that I'm in fact *better off* than my DXA showed. Was it that medimaps group that showed you the study/link to the study? Sorry that I've gotten confused. I've been in a state of confusion ever since seeing my DXA report in May.

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I think it was Sara Meeks - or I googled it independently. I'll try to find it again.
By the way, Algaecal has a good YouTube video of Dr. Fishman's 12 Poses which does the modified poses in the time alotted. I find his video a little difficult because it explains the standard poses not the modified ones.

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@tsc

Hi @catluvr99, it took a couple of days for the Medimaps group to respond, but they did. I think the study of TBS I read showed that 30% of the study participants who were diagnosed did not have osteoporosis. I got my diagnosis Of osteoporosis after a year of being sidelined from strength training because of an autoimmune disorder that made it impossible to move without excruciating pain. Prior to COVID, I was doing Judo, taking hard falls and doing many of the moves and exercises that can cause spinal fractures. So I secretly think I don't have it, but I follow all the protocols anyway just in case I do.
I hope you have success in your quest for a TBS.

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I am confused also what is dexa tbs?

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@sue225

I am interested in Reclast also. May have to switch from Prolia.

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Hi, @sue225 several ago I had two years of Reclast. Then I needed a dental implant. So was told had to wait 5 months to have it and then 5 months before starting again. Had no side effects at all. But waiting to have the implant finished it was more than a year. Never started Reclast again. Then Endo Dr. switched me to Tymlos. I have been on it now off and on for a year. But the side effects were too much for once I got past 7 clicks. Did not use it for 3 weeks and then went to ER with afib and then did not return home for almost 3 months. Now I do not know where I stand but Bone scan is due again. Still trying to gain my strength back to normal life. It has been hard. What will I be put on again is the question? With Tymlos you can have dental work done and no waiting period like Reclast. We will see what the future holds. I did like Reclast. Let me know what you decide. Keep healthy. KLH

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@kilh

Hi, @sue225 several ago I had two years of Reclast. Then I needed a dental implant. So was told had to wait 5 months to have it and then 5 months before starting again. Had no side effects at all. But waiting to have the implant finished it was more than a year. Never started Reclast again. Then Endo Dr. switched me to Tymlos. I have been on it now off and on for a year. But the side effects were too much for once I got past 7 clicks. Did not use it for 3 weeks and then went to ER with afib and then did not return home for almost 3 months. Now I do not know where I stand but Bone scan is due again. Still trying to gain my strength back to normal life. It has been hard. What will I be put on again is the question? With Tymlos you can have dental work done and no waiting period like Reclast. We will see what the future holds. I did like Reclast. Let me know what you decide. Keep healthy. KLH

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Its definitely a problem. Thats a lot of waiting with Reclast. And with my arrythmia (ventricular tachycardia) tymlos and forteo seem too risky.
The researchers need to come up with a better drug.

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@kilh

Hi, @sue225 several ago I had two years of Reclast. Then I needed a dental implant. So was told had to wait 5 months to have it and then 5 months before starting again. Had no side effects at all. But waiting to have the implant finished it was more than a year. Never started Reclast again. Then Endo Dr. switched me to Tymlos. I have been on it now off and on for a year. But the side effects were too much for once I got past 7 clicks. Did not use it for 3 weeks and then went to ER with afib and then did not return home for almost 3 months. Now I do not know where I stand but Bone scan is due again. Still trying to gain my strength back to normal life. It has been hard. What will I be put on again is the question? With Tymlos you can have dental work done and no waiting period like Reclast. We will see what the future holds. I did like Reclast. Let me know what you decide. Keep healthy. KLH

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Just rereading your post. Somehow missed the part about 3 mos hospital stay! Glad you are on the mend and sorry this happened to you. These osteoporosis drugs are a problem

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@sue225

Just rereading your post. Somehow missed the part about 3 mos hospital stay! Glad you are on the mend and sorry this happened to you. These osteoporosis drugs are a problem

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Good afternoon, @sue 225 in the three I went from the main hospital to rehab, extended care with lots of PT, and home. At first, I was not able to walk very steadily so went around in and a wheelchair, to a walker, and now at home, the walker is in the closet. But the biggest thing is being able to cook and clean. I am trying to do a little more each day but sometimes it is hard. We have been eating out two meals a day(late breakfast and early dinner). Someone is tired of eating out and thinks I should cook all of our meals. No patience for a slow recovery. We live on the farm with cattle and if the weather holds out this and next week, he may be able to cut and bale hay for this winter. I am no help at all and I wish recovery was sooo much faster.

I do not know if this was caused from Tymlos but others on it have gone to the ER with afib. My Endo Drs. know about the journey but nothing has been mentioned about Tymlos whether to start again or switch to another drug. I guess I need to bring the subject up with them. I just which that my hands and feet were not cold all the time and the buzzing and fussy noise in my head were gone. But then my BP remains low, I guess till and if my heart muscles repair themselves. I am fatigued and tired. Any decisions made? Let me hear about your progress. How long were you on Tymlos? Take care. KLH

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@kilh

Good afternoon, @sue 225 in the three I went from the main hospital to rehab, extended care with lots of PT, and home. At first, I was not able to walk very steadily so went around in and a wheelchair, to a walker, and now at home, the walker is in the closet. But the biggest thing is being able to cook and clean. I am trying to do a little more each day but sometimes it is hard. We have been eating out two meals a day(late breakfast and early dinner). Someone is tired of eating out and thinks I should cook all of our meals. No patience for a slow recovery. We live on the farm with cattle and if the weather holds out this and next week, he may be able to cut and bale hay for this winter. I am no help at all and I wish recovery was sooo much faster.

I do not know if this was caused from Tymlos but others on it have gone to the ER with afib. My Endo Drs. know about the journey but nothing has been mentioned about Tymlos whether to start again or switch to another drug. I guess I need to bring the subject up with them. I just which that my hands and feet were not cold all the time and the buzzing and fussy noise in my head were gone. But then my BP remains low, I guess till and if my heart muscles repair themselves. I am fatigued and tired. Any decisions made? Let me hear about your progress. How long were you on Tymlos? Take care. KLH

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If it was me, I would not go back on Tymlos. Would be worried about landing in the hospital again. There are other drugs to be tried.
Your husband will just have to be patient! You sound like you are doing the best you can. Wish you daily continued improvement. And no more Tymlos.

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@geedle12

I am confused also what is dexa tbs?

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Hi, @geedle12 When I said "I'll be sure to make my next DXA scan a DXA-TBS," the term "DXA-TBS" was just my shorthand term for "a DXA scan with a setting to also figure a Trabecular Bone Score (TBS)." I used that term "DXA-TBS" a day or two ago, when I thought that, in order to figure a TBS score, we had to ask for the TBS score to be set *during the DXA scan session," but now I'm getting the opposite info! It was American Bone Health organization who told me that I can't give my DXA scan to a facility who has TBS equipment and ask them to analyze it to figure out a TBS score *after the fact* (meaning months after my DXA was already performed). But Dr Keith McCormick seems to be telling me the opposite; he seems to be saying that I CAN in fact send my May 2022 DXA scan to a facility who has TBS software, and have them determine the score from my May 2022 DXA scan. I'm not clear yet if the facility has to be the same exact facility who did my DXA; I don't see why it would have to be, but who knows. I'll get to the bottom of this eventually!!! Sorry if I'm confusing you even more at this point. I tend to get thick into the weeds on everything.

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@catluvr999

Hi, @geedle12 When I said "I'll be sure to make my next DXA scan a DXA-TBS," the term "DXA-TBS" was just my shorthand term for "a DXA scan with a setting to also figure a Trabecular Bone Score (TBS)." I used that term "DXA-TBS" a day or two ago, when I thought that, in order to figure a TBS score, we had to ask for the TBS score to be set *during the DXA scan session," but now I'm getting the opposite info! It was American Bone Health organization who told me that I can't give my DXA scan to a facility who has TBS equipment and ask them to analyze it to figure out a TBS score *after the fact* (meaning months after my DXA was already performed). But Dr Keith McCormick seems to be telling me the opposite; he seems to be saying that I CAN in fact send my May 2022 DXA scan to a facility who has TBS software, and have them determine the score from my May 2022 DXA scan. I'm not clear yet if the facility has to be the same exact facility who did my DXA; I don't see why it would have to be, but who knows. I'll get to the bottom of this eventually!!! Sorry if I'm confusing you even more at this point. I tend to get thick into the weeds on everything.

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Thanks for the clarification!

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