1. < Osteoporosis & Bone Health

disappointing results: would you continue or skip 2nd year of tymlos?

Posted by katwhisperer @katwhisperer, Feb 3 2:32pm

From what I've read, year 1 is usually one's best results on Tymlos, with 2nd year not as productive. I just got my DXA after 1 year on Tymlos and it's somewhat disappointing. a 5% gain in spine, no gains in hip or femur neck. Still firmly in osteoporosis land.

Tymlos is costing me a lot of money, as the Radius savings card runs out midway thru year. I'm wondering if a 2nd year is even worth it, if most gains are in year 1?

Seeing doc soon to discuss, but feeling discouraged. (I don't smoke or drink alcohol, maintain a good diet (no added sugar or salt, plenty of healthy veggies and proteins, very little red meat) get plenty of calcium, Vitamin D3, K2 and do weight training and weight bearing cardio daily. I don't think there's much more I can do.) 🙁

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

katwhisperer | @katwhisperer | Feb 4 11:24am
In reply to @ymv "I’m only 9 months into Tymlos and recently had bone markers done. Very little increase in..." + (show)
@ymv

I’m only 9 months into Tymlos and recently had bone markers done. Very little increase in both p1np and ctx. From what I’ve read the 18 month mark is the best. Yes, it’s very expensive but, personally, I will continue as there aren’t many other options for me. From reading some posts, Tymlos treatment time may be extended beyond the 2 years. What will you transition to after Tymlos?

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Thanks for chiming in YMV - really appreciate you sharing your experience.

No bone markers were done, so just going by the DXA. You wisely asked the same "what's next" as others - and my reply is "um - I'm not sure!"

Maybe exploring switch to Forteo (I tolerate meds well so switching may not cause problems.) But I'm already approved for Tymlos: not sure if I'd be approved by my insurance to switch or if it would be a hassle to get reauthorized. (I'm on employer insurance.)

Or maybe give Tymlos 6 more months - based upon what windyshores and mayblin have mentioned. At worst, I'd hopefully maintain vs lose more.

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06111945cc | @06111945cc | Feb 4 11:49am
In reply to @susyt "Could someone please explain about this these "markers" in your blood? I've been to a couple..." + (show)
@susyt

Could someone please explain about this these "markers" in your blood? I've been to a couple endocrinologists, and a doctor specializing in osteoporosis, and no one has ever done it talked about these blood tests. Thank you!

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Read “Good Bones”.

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1 reply
mayblin | @mayblin | Feb 4 1:49pm
In reply to @katwhisperer "@mayblin Thanks for your insights and windyshore's as well! I do greatly appreciate you both responding...." + (show)
@katwhisperer

@mayblin Thanks for your insights and windyshore's as well! I do greatly appreciate you both responding.

Based upon my last conversation with my doc, he's firmly in camp of doing the full 2 years. But this was BEFORE my 1 year DXA results. Curious if this will alter his thinking when I see him soon.

Yes...I have been debating next steps if stopping. A Bisphosphonate would only maintain the little I gained. I was hoping to keep Evenity in reserve as an option for AFTER full 2 years of another bone-builder - vs use it up too soon, if that makes sense?

I wonder if switching to Forteo for 6 mon-1 yr might be the fresh "shot" my body needs- no pun intended 🙂 to improve hip density, since F seems to do better on hips than T? Would have to ask doc about any risks switching midstream.

To be fair, for all I know Tymlos DID stop further loss, so don't want to do anything dumb, just because results aren't as good as I hoped. Just feeling really discouraged.

I did get TBS scores last year before starting Tymlos and again 1 year later (from the same machine.) I just don't understand what they mean or how to interpret them. I need to google and see if I can figure that out.

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From what I've read, on the contrary, t has more effects on hip than f. The two drugs are so similar in many ways, personally I don't see a lot advantages switching from t to f, especially at the stage you are in. See if others can chime in with regards to this take. As far as follow up with evenity, follow windyshore as she is a pioneer with this combo sequence. And, of course, consult with your team of physicians.

Tbs provides a bit insight to the 'quality' of one's bone, though I haven't read too much into it yet and not sure how it relates to true bone quality. Mine improved to lower end of normal, but i still have op. How does this make sense? Nonetheless, it provides some info to us. Yea Google it and see where yours land.

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njhornung | @normahorn | Feb 4 1:59pm

This is from pdr.net (physicians desk reference):

"Romosozumab is also a treatment option for patients previously treated with teriparatide or abaloparatide."

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awfultruth | @awfultruth | Feb 4 2:25pm
In reply to @katwhisperer "@mayblin Thanks for your insights and windyshore's as well! I do greatly appreciate you both responding...." + (show)
@katwhisperer

@mayblin Thanks for your insights and windyshore's as well! I do greatly appreciate you both responding.

Based upon my last conversation with my doc, he's firmly in camp of doing the full 2 years. But this was BEFORE my 1 year DXA results. Curious if this will alter his thinking when I see him soon.

Yes...I have been debating next steps if stopping. A Bisphosphonate would only maintain the little I gained. I was hoping to keep Evenity in reserve as an option for AFTER full 2 years of another bone-builder - vs use it up too soon, if that makes sense?

I wonder if switching to Forteo for 6 mon-1 yr might be the fresh "shot" my body needs- no pun intended 🙂 to improve hip density, since F seems to do better on hips than T? Would have to ask doc about any risks switching midstream.

To be fair, for all I know Tymlos DID stop further loss, so don't want to do anything dumb, just because results aren't as good as I hoped. Just feeling really discouraged.

I did get TBS scores last year before starting Tymlos and again 1 year later (from the same machine.) I just don't understand what they mean or how to interpret them. I need to google and see if I can figure that out.

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Both Forteo and Tymlos are believed to work by a very similar mechanism. I would guess that if you want to see bigger gains you might try Evenity as it does work by a completely different mechanism. I tend to think switching to Forteo would be like continuing Tymlos for the 2nd year. "Teriparatide (brand name Forteo) and abaloparatide (brand name Tymlos) are medications used to treat osteoporosis. Forteo is a lab-made version of human parathyroid hormone (PTH) and Tymlos is a version of human parathyroid hormone-protein. These two drugs are both similar to the PTH that your body produces naturally."
And yet you never know for sure, even though Tymlos and Forteo are similar you might get a different and improved response to Forteo.

BTW in terms of benefiting the hip my memory of different reporting on the three anabolics is that Forteo tends to have the least benefit for the hip (and forearm) with Tymlos slightly better and Evenity better still.

Sorry you didn't get 10-15% improvement and best of luck on whatever you do next.

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sallyj2 | @sallyj2 | Feb 4 4:01pm
In reply to @teb "yes, I seem to be." + (show)
@teb

yes, I seem to be.

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Yippee!! Great news! Very happy for you! I know it’s all individualized, but would you mind sharing what your doses are?

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1 reply
teb | @teb | Feb 4 4:32pm
In reply to @sallyj2 "Yippee!! Great news! Very happy for you! I know it’s all individualized, but would you mind..." + (show)
@sallyj2

Yippee!! Great news! Very happy for you! I know it’s all individualized, but would you mind sharing what your doses are?

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thank you! yes, everyone reacts differently but the .025 transdermal dose (the lowest dose) is supposed to have bone-maintainence effects. I've been on that for 5 years. I just increased my dose to .037, the next available dose. Still a very low dose but perhaps will have a slightly greater impact and I was hoping it would help with sleep. No luck there though.

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1 reply
sallyj2 | @sallyj2 | Feb 4 4:36pm
In reply to @teb "thank you! yes, everyone reacts differently but the .025 transdermal dose (the lowest dose) is supposed..." + (show)
@teb

thank you! yes, everyone reacts differently but the .025 transdermal dose (the lowest dose) is supposed to have bone-maintainence effects. I've been on that for 5 years. I just increased my dose to .037, the next available dose. Still a very low dose but perhaps will have a slightly greater impact and I was hoping it would help with sleep. No luck there though.

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Do you use transdermal Estradiol or Estriol or a mix? I’m using mix, but having fluid retention. I increased Progesterone to 100mg. hoping for help with sleep, but as you said, no luck.

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rajmayo22 | @rajmayo22 | Feb 5 8:45am

All these 17 updates of today were very useful me.

Since Sept 2022, I have been on Tymlos. I did a DEXA after a year and radiology report description) said significant increase. (I wish I had insisted my endo doc that she views actual DEXA scan. If I were an endo practioner, I would have done that automatically.)

My endo doc has retired and I have a new endo doc who did review my med and bone history with me. She is willing to prescribe me tests of my choosing. After being on this support group, I see value in doing TBS and PINp and may be CTX. (I haven't checked for cost coverage of these tests. My medical insurance probably would cover these.)

She suggested that after 2 years of Tymlos, I would be a candidate for 70 mg/wk Fosamax or annual infusion type bone-building med. (For 10+ years, I was on Fosamax but discontinued as my Osteopenia was stable; may be a mistake on my part.)

I would welcome further discussion on my comment.

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