Looking for input on 2nd opinion after 3 years of Alendronate

Posted by patwerthman @patwerthman, Jan 26 6:24pm

So, I received a virtual second opinion and was recommended to use an osteo-anabolic agent. Suggested options are Evenity, Tymlos, or Forteo. Then to follow these treatments with an anti resorption med to prevent rebound bone loss. IV Reclast. Goal to get T score to -2.5, as with just alendronate this isn’t going to happen.
Goes on saying a step wise approach considering the severity of my bone density starting with Forteo or Tymlos, followed by Evenity,…
So my T score in 2022 was -3.7, 2023. 3.5, & 2024 was 3.7. Just on alendronate and taking calcium supplements and vitamin D. I just got this message and am unsure what my primary care physician will say or be willing to do. I’m not satisfied with this course of action. I’ve been an active 64 year old and have not broken anything yet.

It seems many on here have experience with some of these meds and such. Any thoughts?

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

It sounds like you need an endocrinologist. It is preferable to start with an anabolic and then alendronate or Reclast. Your prior use of alendronate may reduce effectiveness of the anabolics somewhat. It would be good to talk to an endocrinologist about what to do!

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@windyshores

It sounds like you need an endocrinologist. It is preferable to start with an anabolic and then alendronate or Reclast. Your prior use of alendronate may reduce effectiveness of the anabolics somewhat. It would be good to talk to an endocrinologist about what to do!

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I saw an endocrinologist after my most recent T score results for 2024. Unfortunately the endocrinologist felt there wasn’t more that I could do, but follow with continued use of alendondrate & vitamins.

That’s very discouraging to think that other meds now won’t be as effective due to taking the alendondrate as I was prescribed. That’s very disappointing ☹️

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patwerthman, I'm curious about the source of your virtual recommendation.
I don't have experience with the medications except Forteo. Bisphosphonates are now recommended for three to five years. Because you haven't gained density with alendronate over the last year, it's a great time for the switch. I have a preference for Forteo because it is a lower dose of medication than Tymlos and because I'm not content with the mechanism of action of Evenity.
There isn't a way of determining how much bone loss aledronate has prevented. You probably have and will maintain fracture protection for several years from taking it, even as your bmd remains low.
In your situation, I would take Forteo or Tymlos for two years. Prior bisphosphonate use is said to delay the effectiveness of either medication, studies have shown that there isn't significant difference after one and two years of use. There isn't actual rebound with either Tymlos or Forteo. There is gradual bone loss after you quit using either drug.
I'm starting a third year with Forteo. At 16 months the T score changes in the spine were from -3.3 to -2.8; femoral neck -3.0 to -2.9 ; right hip loss from -2.4 to -2.5. The trabecular structure improved reducing fracture risk in the spine and the hips.
The endocrinology response surprises me.

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@patwerthman

I saw an endocrinologist after my most recent T score results for 2024. Unfortunately the endocrinologist felt there wasn’t more that I could do, but follow with continued use of alendondrate & vitamins.

That’s very discouraging to think that other meds now won’t be as effective due to taking the alendondrate as I was prescribed. That’s very disappointing ☹️

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@patwerthman The effectiveness of Tymlos, Forteo or Evenity should still be very helpful after alendronate!

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I have done both Tymlos and teriparatide (generic Forteo) after five years of alendronate. I was referred to a rheumatologist after fracturing on Alendronate. My spinal t-scores were never in the osteoporotic range.

I was on Tymlos for 4.5 months then switched to Forteo as my commercial insurance would not longer cover Tymlos.

I much prefer the Forteo as I have fewer side effects. I thought I was tolerating the Tymlos ok but now that I am on Forteo, it’s clear that it was impacting me in several ways more so than Forteo.

I haven’t been on either for long enough to see an outcome (6 months) but it’s been 13 months and I haven’t fractured again.

Is it possible for you to get another opinion on your long term treatment? I am 63 and also active and realize now that I really need the best plan for me for the rest of my life. I plan to have a discussion with my rheumatologist about that soon as she has not discussed what comes next at all. I also have an appointment with an endocrinologist specializing in osteoporosis in April to discuss the same. My insurance company allows me to see any specialist I want as long as my PCP submits a referral to the specialist.

I’d still see someone even if insurance wouldn’t pay as this is too important for me to get wrong. I am still working and planning an active retirement and want to ensure I am as healthy as possible and ensuring my osteoporosis is treated appropriately for me is critical.

Wishing you all the best and hoping you can find a doctor to work with you on this,

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I could not tolerate Forteo, which delayed my osteoporosis treatment for a few years, until Tymlos became available. On Tymlos, my spine went from -3.7 to -2.5 and my hip from -3.3 to -2.9.

I plan on asking my doctor about the dosage differences between Forteo and Tymlos. Forteo is a parathyroid hormone and Tymlos is a parathyroid protein, so I wonder if Forteo's action is more direct and therefore the dosage is lower. Does anyone have info on this? Of course, the Tymlos dose is adjustable but some may take 1/2 to mimic Forteo dosage and it would be good to know if that is a valid choice.

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@oopsiedaisy

I have done both Tymlos and teriparatide (generic Forteo) after five years of alendronate. I was referred to a rheumatologist after fracturing on Alendronate. My spinal t-scores were never in the osteoporotic range.

I was on Tymlos for 4.5 months then switched to Forteo as my commercial insurance would not longer cover Tymlos.

I much prefer the Forteo as I have fewer side effects. I thought I was tolerating the Tymlos ok but now that I am on Forteo, it’s clear that it was impacting me in several ways more so than Forteo.

I haven’t been on either for long enough to see an outcome (6 months) but it’s been 13 months and I haven’t fractured again.

Is it possible for you to get another opinion on your long term treatment? I am 63 and also active and realize now that I really need the best plan for me for the rest of my life. I plan to have a discussion with my rheumatologist about that soon as she has not discussed what comes next at all. I also have an appointment with an endocrinologist specializing in osteoporosis in April to discuss the same. My insurance company allows me to see any specialist I want as long as my PCP submits a referral to the specialist.

I’d still see someone even if insurance wouldn’t pay as this is too important for me to get wrong. I am still working and planning an active retirement and want to ensure I am as healthy as possible and ensuring my osteoporosis is treated appropriately for me is critical.

Wishing you all the best and hoping you can find a doctor to work with you on this,

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Oh thank you for this response and for sharing your situation. It really is reassuring and helpful. I agree with you on needing a plan -this is just not acceptable as is. I absolutely will continue to seek doctors who will evaluate this & treat me for this more appropriately. Can I ask what region of the country you are in? Or how you find someone? I am in the Green Bay Area and have or will consult with Mayo, Marshfield, Cleveland, or Milwaukee .

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@gently

patwerthman, I'm curious about the source of your virtual recommendation.
I don't have experience with the medications except Forteo. Bisphosphonates are now recommended for three to five years. Because you haven't gained density with alendronate over the last year, it's a great time for the switch. I have a preference for Forteo because it is a lower dose of medication than Tymlos and because I'm not content with the mechanism of action of Evenity.
There isn't a way of determining how much bone loss aledronate has prevented. You probably have and will maintain fracture protection for several years from taking it, even as your bmd remains low.
In your situation, I would take Forteo or Tymlos for two years. Prior bisphosphonate use is said to delay the effectiveness of either medication, studies have shown that there isn't significant difference after one and two years of use. There isn't actual rebound with either Tymlos or Forteo. There is gradual bone loss after you quit using either drug.
I'm starting a third year with Forteo. At 16 months the T score changes in the spine were from -3.3 to -2.8; femoral neck -3.0 to -2.9 ; right hip loss from -2.4 to -2.5. The trabecular structure improved reducing fracture risk in the spine and the hips.
The endocrinology response surprises me.

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I did a paid virtual second opinion with Cleveland clinic. They interviewed me and gathered my medical past with test results & clinic visits. Sent a report with recommendations

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@windyshores

@patwerthman The effectiveness of Tymlos, Forteo or Evenity should still be very helpful after alendronate!

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I hope so!

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@patwerthman

Oh thank you for this response and for sharing your situation. It really is reassuring and helpful. I agree with you on needing a plan -this is just not acceptable as is. I absolutely will continue to seek doctors who will evaluate this & treat me for this more appropriately. Can I ask what region of the country you are in? Or how you find someone? I am in the Green Bay Area and have or will consult with Mayo, Marshfield, Cleveland, or Milwaukee .

Jump to this post

I am in the San Francisco Bay Area and noted that folks here mentioned going to the Stanford Osteoporosis and Metabolic Bone Diseases Clinic so I contacted them about how to become a patient. I had to have my doctor submit a referral. Once that was done and they reviewed my medical records, they agreed to see me. I am so glad they did and I am really looking forward to my appointment.

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