1. < Osteoporosis & Bone Health

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?

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gently | @gently | Jan 30 7:06pm
In reply to @patwerthman "I did a paid virtual second opinion with Cleveland clinic. They interviewed me and gathered my..." + (show)
@patwerthman

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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Interesting. I was wondering how you got excellent advice with a virtual. Cleveland Clinic explains that. Which doctor?

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1 reply
patwerthman | @patwerthman | Jan 30 10:53pm
In reply to @gently "Interesting. I was wondering how you got excellent advice with a virtual. Cleveland Clinic explains that...." + (show)
@gently

Interesting. I was wondering how you got excellent advice with a virtual. Cleveland Clinic explains that. Which doctor?

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Yes. Very. Interesting Elisabeth Ray

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bktexas | @bktexas | Jan 31 12:36am
In reply to @windyshores "I could not tolerate Forteo, which delayed my osteoporosis treatment for a few years, until Tymlos..." + (show)
@windyshores

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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Sounds like Tymlos really did work well for you! Can you plz tell me if you had any of the side effects they mention as to Tymlos? Did you experience feeling bad for hours after an injection? I am personally torn as to whether to take Tymlos or Evenity. I do prefer to take on injection once month vs daily. Sorry, cannot recall what my numbers are currently. I just know that my endocronologist said I need to get on something asap. I have been on Fosmax for about 12 months. Fortunately, I have never had a fracture! My dr is shocked about that!
Can you comment on which is better, Tymlos or Evenity?
So happy your numbers were so improved. That too is my goal.

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1 reply
windyshores | @windyshores | Jan 31 7:36am
In reply to @bktexas "Sounds like Tymlos really did work well for you! Can you plz tell me if you..." + (show)
@bktexas

Sounds like Tymlos really did work well for you! Can you plz tell me if you had any of the side effects they mention as to Tymlos? Did you experience feeling bad for hours after an injection? I am personally torn as to whether to take Tymlos or Evenity. I do prefer to take on injection once month vs daily. Sorry, cannot recall what my numbers are currently. I just know that my endocronologist said I need to get on something asap. I have been on Fosmax for about 12 months. Fortunately, I have never had a fracture! My dr is shocked about that!
Can you comment on which is better, Tymlos or Evenity?
So happy your numbers were so improved. That too is my goal.

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@bktexas it is really impossible to say which is better for you. I did Tymlos first and then 4 months of Evenity, then Reclast and hope to go back on an anabolic.

One thing I will say is that personally I would not base this decision on daily vs monthly injections. The Tymlos injections are really easy, done with a pen, and one advantage is that the medicine is out of your body in hours. Evenity tends to peak in a week or so and stays in your body for two months, according to what folks have posted here and Dr. Google.

The Tymlos pen has adjustable doses so a lot of us have tried a full dose and then backed down to a lower dose and slowly moved up, because the body adjusts.

Bottom line is that no matter what you choose, excellent improvements are likely.

My doctor wasn't keen on me doing Evenity after Tymlos because he said "there is no data" but quite a few people are doing that. Generally people don't do Tymlos after Evenity (see Dr. Ben Leder's videos, McCormick's book "Great Bones") as evidenced as well in this forum.

My friend just went from -4.1 to -2.5 for spine on Evenity. I went from -3.7 to -2.6 on Tymlos. I also gained 9% in hip on Tymlos.

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1 reply
patwerthman | @patwerthman | Jan 31 8:56am
In reply to @windyshores "@bktexas it is really impossible to say which is better for you. I did Tymlos first..." + (show)
@windyshores

@bktexas it is really impossible to say which is better for you. I did Tymlos first and then 4 months of Evenity, then Reclast and hope to go back on an anabolic.

One thing I will say is that personally I would not base this decision on daily vs monthly injections. The Tymlos injections are really easy, done with a pen, and one advantage is that the medicine is out of your body in hours. Evenity tends to peak in a week or so and stays in your body for two months, according to what folks have posted here and Dr. Google.

The Tymlos pen has adjustable doses so a lot of us have tried a full dose and then backed down to a lower dose and slowly moved up, because the body adjusts.

Bottom line is that no matter what you choose, excellent improvements are likely.

My doctor wasn't keen on me doing Evenity after Tymlos because he said "there is no data" but quite a few people are doing that. Generally people don't do Tymlos after Evenity (see Dr. Ben Leder's videos, McCormick's book "Great Bones") as evidenced as well in this forum.

My friend just went from -4.1 to -2.5 for spine on Evenity. I went from -3.7 to -2.6 on Tymlos. I also gained 9% in hip on Tymlos.

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Wow! Love to hear improvements!

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ekarasoulis59 | @ekarasoulis59 | Jan 31 10:07am

I have been on alendronate sodium 70 mg for 10 years. My doctor said it did his work. It won’t help me anymore. As with you, I was taking calcium and vitamin D for 15 years and alendronate. I was osteopenia, and it became osteoporosis. And we don’t know why I am now on a holiday which means no more sodium next step is to see what they can do for me.

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2 replies
patwerthman | @patwerthman | Jan 31 10:51am
In reply to @ekarasoulis59 "I have been on alendronate sodium 70 mg for 10 years. My doctor said it did..." + (show)
@ekarasoulis59

I have been on alendronate sodium 70 mg for 10 years. My doctor said it did his work. It won’t help me anymore. As with you, I was taking calcium and vitamin D for 15 years and alendronate. I was osteopenia, and it became osteoporosis. And we don’t know why I am now on a holiday which means no more sodium next step is to see what they can do for me.

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Oh this sounds somewhat familiar. I am actively seeking a new provider as there are other options that likely could be more helpful. Unfortunately there’s a 4-5 month wait time to get into anyone I’ve tried so far. Or else the ones I’ve selected aren’t taking new patients, and one retired

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hungrybirder | @hungrybirder | Jan 31 11:36am
In reply to @ekarasoulis59 "I have been on alendronate sodium 70 mg for 10 years. My doctor said it did..." + (show)
@ekarasoulis59

I have been on alendronate sodium 70 mg for 10 years. My doctor said it did his work. It won’t help me anymore. As with you, I was taking calcium and vitamin D for 15 years and alendronate. I was osteopenia, and it became osteoporosis. And we don’t know why I am now on a holiday which means no more sodium next step is to see what they can do for me.

Jump to this post

Dear ekarasoulis59,
78 here and on bisphosphonates 7 years followed by a long drug holiday. Had to go back on the bisphosphonates in 2021 and wondered if the drug holiday sort of "reset" things.
Just recently I discovered this Mayo Press article addressing just that; it's from January 2024 so should reflect current thinking.
The paragraph I found interesting follows:

The optimal duration of oral bisphosphonate therapy is typically 5 to 10 years, and for intravenous (IV) bisphosphonates it’s 3 to 6 years. This varies based on your individual fracture risk at one time. Beyond this, a “drug holiday” or withdrawal period is recommended to prevent harmful accumulation of the medicine. After this break, bisphosphonates are often resumed without long-term complications, after proper time lapsed for the natural remodeling process to reset and function normally.

It addressed the length of the holiday later in the article which you can read at:
https://mcpress.mayoclinic.org/healthy-aging/taking-a-break-from-osteoporosis-medicine-what-you-need-to-know/

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1 reply
patwerthman | @patwerthman | Jan 31 12:13pm
In reply to @hungrybirder "Dear ekarasoulis59, 78 here and on bisphosphonates 7 years followed by a long drug holiday. Had..." + (show)
@hungrybirder

Dear ekarasoulis59,
78 here and on bisphosphonates 7 years followed by a long drug holiday. Had to go back on the bisphosphonates in 2021 and wondered if the drug holiday sort of "reset" things.
Just recently I discovered this Mayo Press article addressing just that; it's from January 2024 so should reflect current thinking.
The paragraph I found interesting follows:

The optimal duration of oral bisphosphonate therapy is typically 5 to 10 years, and for intravenous (IV) bisphosphonates it’s 3 to 6 years. This varies based on your individual fracture risk at one time. Beyond this, a “drug holiday” or withdrawal period is recommended to prevent harmful accumulation of the medicine. After this break, bisphosphonates are often resumed without long-term complications, after proper time lapsed for the natural remodeling process to reset and function normally.

It addressed the length of the holiday later in the article which you can read at:
https://mcpress.mayoclinic.org/healthy-aging/taking-a-break-from-osteoporosis-medicine-what-you-need-to-know/

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Thanks for sharing

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