Undecided choice of drugs for Osteoporosis

Posted by peace44 @peace44, Oct 10, 2023

I am 80 years old women and have borderline osteoporosis which affects my entire body. My doctor wants me to take Prolia and the Rheumatologist wants me to take Reclast. I’m unhappy with both choices as the side effects are great and I do not tolerate new drugs well. I am very undecided and am considering doing not taking annty drugs for this condition. I have never had a fracture and I’m very active Any opinions or advice.

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@tilou

Gently, what is a TBS? TY

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Yes, more fractures happen in osteopenic women than in osteoporotic women. That is because there are far more osteopenic women than there are osteoporotic women.

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@windyshores

@ahmeyers I chose Tymlos because the dose pen is adjustable so I could ramp up slowly. I never took the full dose (I am small) and still had excellent gains. It is otherwise very similar to Forteo.

The other reason was that I was told I could do Evenity after Tymlos but not the other way around. I will do a 20% test dose of Reclast to "lock in" gains after the other meds.

Osteoporosis does not have symptoms. We feel strong. I was doing sword tai chi for several months. I still fractured three lumbar vertebrae with one wrong movement. My Tymlos was delayed by COVID unfortunately. You do not want to be me, and have the pain and disability from fractures. Side effects of meds, if they happen, are, in my view, worth it. But the lack of symptoms from osteoporosis makes it hard to be motivated!

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Have you heard of lost density on hip while on Tymlos? What sude effects have you had? Were you still feeling well enough to exercise while in a Tymlos?

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@sallyj2

Have you heard of lost density on hip while on Tymlos? What sude effects have you had? Were you still feeling well enough to exercise while in a Tymlos?

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@sallyj2 I had a 9% gain in hip and 20% gain in spine. Many side effects go away after a few weeks. I minimized mine by ramping up slowly and doing whatever dose I could tolerate, which ended up being 7 out of 8 clicks for much of the time. If I had something important to do on a given day I did less. Exercise was not only possible, but, for me, it helped with side effects. I felt worse if I stayed in bed. I did it in the morning and for me, side effects were better that way.

@cat714 Evenity was very new when I started Tymlos two and a half years ago. I did a masterclass with Dr. Lani Simpson who mentioned the sequence issue. The only think I have read is that Evenity "turbocharges" growth so there is less left for Tymlos to do. I also wonder if the anti-resorptive effects of Evenity reduce the effectiveness of Tymlos (similarly to bisphosphonates and Prolia). You can try Tymlos after Evenity and do blood tests- CTX and P1NP- and let us know if it is working for you!!

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@windyshores

@sallyj2 I had a 9% gain in hip and 20% gain in spine. Many side effects go away after a few weeks. I minimized mine by ramping up slowly and doing whatever dose I could tolerate, which ended up being 7 out of 8 clicks for much of the time. If I had something important to do on a given day I did less. Exercise was not only possible, but, for me, it helped with side effects. I felt worse if I stayed in bed. I did it in the morning and for me, side effects were better that way.

@cat714 Evenity was very new when I started Tymlos two and a half years ago. I did a masterclass with Dr. Lani Simpson who mentioned the sequence issue. The only think I have read is that Evenity "turbocharges" growth so there is less left for Tymlos to do. I also wonder if the anti-resorptive effects of Evenity reduce the effectiveness of Tymlos (similarly to bisphosphonates and Prolia). You can try Tymlos after Evenity and do blood tests- CTX and P1NP- and let us know if it is working for you!!

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I'm waiting for an appointment with endo. I will be finished with evenity in April. My interest I tylmos is coz of click size till body is used to it & I've read that dentist don't have problems with it. I will report back when I see her

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@windyshores

@sallyj2 I had a 9% gain in hip and 20% gain in spine. Many side effects go away after a few weeks. I minimized mine by ramping up slowly and doing whatever dose I could tolerate, which ended up being 7 out of 8 clicks for much of the time. If I had something important to do on a given day I did less. Exercise was not only possible, but, for me, it helped with side effects. I felt worse if I stayed in bed. I did it in the morning and for me, side effects were better that way.

@cat714 Evenity was very new when I started Tymlos two and a half years ago. I did a masterclass with Dr. Lani Simpson who mentioned the sequence issue. The only think I have read is that Evenity "turbocharges" growth so there is less left for Tymlos to do. I also wonder if the anti-resorptive effects of Evenity reduce the effectiveness of Tymlos (similarly to bisphosphonates and Prolia). You can try Tymlos after Evenity and do blood tests- CTX and P1NP- and let us know if it is working for you!!

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Thanks, windyshores. I couldn't find a source for the idea that Evenity shouldn't be followed by Forteo. I wonder if that sequence issue is still held. Since the first 3 months are turbocharced growth and the last 9 antiresorptive. (You are probably my souce for both ideas.) Following the antiresorptive 9 months with Forteo or Tymlos would, then, be ideal.

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@windyshores

@sallyj2 I had a 9% gain in hip and 20% gain in spine. Many side effects go away after a few weeks. I minimized mine by ramping up slowly and doing whatever dose I could tolerate, which ended up being 7 out of 8 clicks for much of the time. If I had something important to do on a given day I did less. Exercise was not only possible, but, for me, it helped with side effects. I felt worse if I stayed in bed. I did it in the morning and for me, side effects were better that way.

@cat714 Evenity was very new when I started Tymlos two and a half years ago. I did a masterclass with Dr. Lani Simpson who mentioned the sequence issue. The only think I have read is that Evenity "turbocharges" growth so there is less left for Tymlos to do. I also wonder if the anti-resorptive effects of Evenity reduce the effectiveness of Tymlos (similarly to bisphosphonates and Prolia). You can try Tymlos after Evenity and do blood tests- CTX and P1NP- and let us know if it is working for you!!

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@windyshores while I'm very envious of your remarkable results, I'm truly very happy for you!

Do you mind sharing your tbs results before and after treatment? Does your doctor use bone turnover markers to monitor treatment progress, as well as using them to direct future treatment plans?

What treatment(s) did you have before tymlos, if any? Im especially intersted to hear whether or not you had past bisphosphalate treatment(s). Have you decided with your physicain what's next after tymlos?

I'm using forteo right now. Although forteo and tymlos are similar analogs of pth, one thing strikes me is their dosing difference. It looked like forteo manufacturer had 20, 40, 80 mcg tested, using 20mcg as their marked product indicates higher dosing may not offer much upside, or they'd like to avoid unforeseen severe side effects with higher dosing after market. After all, forteo is the pioneer as anabolic therapy. Did you know if effects of tymlos on bone building is dose dependent, ie, higher dose produces more bone growth? If so, then tymlos would be a better anabolic choice, considering other factors being equal?

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@mayblin

@windyshores while I'm very envious of your remarkable results, I'm truly very happy for you!

Do you mind sharing your tbs results before and after treatment? Does your doctor use bone turnover markers to monitor treatment progress, as well as using them to direct future treatment plans?

What treatment(s) did you have before tymlos, if any? Im especially intersted to hear whether or not you had past bisphosphalate treatment(s). Have you decided with your physicain what's next after tymlos?

I'm using forteo right now. Although forteo and tymlos are similar analogs of pth, one thing strikes me is their dosing difference. It looked like forteo manufacturer had 20, 40, 80 mcg tested, using 20mcg as their marked product indicates higher dosing may not offer much upside, or they'd like to avoid unforeseen severe side effects with higher dosing after market. After all, forteo is the pioneer as anabolic therapy. Did you know if effects of tymlos on bone building is dose dependent, ie, higher dose produces more bone growth? If so, then tymlos would be a better anabolic choice, considering other factors being equal?

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I could not tolerate Forteo at all, even a 10% dose done at an immunologist!

McCormick does not suggest TBS testing for me since the results would probably be disheartening 🙂 I have 7 spinal fractures, three from trauma and 4 from an unwise movement.

I did not have any treatments before Tymlos. I was not able to tolerate Fosamax and during my cancer treatment, which affected bones, doc was afraid of Reclast due to my atrial fibrillation. Prolia was never considered for several reasons.

My doc does not monitor CTX and P1NP so I see McCormick for interpretation of those and my PCP orders them. I saw a second opinion doc who does use blood tests and may see her as well. My main endo says an entire conference could cover the debate on using these tests. I like to have a variety of opinions!

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Hello Wendy Shores,

You said: “My doc does not monitor CTX and P1NP so I see McCormick for interpretation of those and my PCP orders them. I saw a second opinion doc who does use blood tests and may see her as well.”

My endocrinologist refused to order CTX and P1 NP.

I’m interested in the fact that your PCP ordered those test for you. Did Medicare pay for them?

cc

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069111945cc,
original medicare pays for the bone marker tests every three months. And pays for yearly dxa.
Thanks for the question to our resident expert.

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@windyshores

I could not tolerate Forteo at all, even a 10% dose done at an immunologist!

McCormick does not suggest TBS testing for me since the results would probably be disheartening 🙂 I have 7 spinal fractures, three from trauma and 4 from an unwise movement.

I did not have any treatments before Tymlos. I was not able to tolerate Fosamax and during my cancer treatment, which affected bones, doc was afraid of Reclast due to my atrial fibrillation. Prolia was never considered for several reasons.

My doc does not monitor CTX and P1NP so I see McCormick for interpretation of those and my PCP orders them. I saw a second opinion doc who does use blood tests and may see her as well. My main endo says an entire conference could cover the debate on using these tests. I like to have a variety of opinions!

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Windyshores, do you know McCormick's method of interpretation. I'm winging it. My advisor disappears like a mad scientist once in a while

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