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

Posted by katwhisperer @katwhisperer, Feb 3, 2024

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.

tetris | @tetris | Feb 5, 2024

In reply to @06111945cc "Read “Good Bones”." + (show)

I think you mean “Great Bones”, not Good Bones”, the book Keith McCormick published last year.

mayblin | @mayblin | Feb 5, 2024

In reply to @rajmayo22 "All these 17 updates of today were very useful me. Since Sept 2022, I have been..." + (show)

You were on fosamax for more than 10 years, then stopped for a while, right? May I ask how long was your drug holiday between stopping of fosamax and the start of tymlos? Whats the %bmd increase after first year of tymlos?

rajmayo22 | @rajmayo22 | Feb 6, 2024

In reply to @mayblin "You were on fosamax for more than 10 years, then stopped for a while, right? May..." + (show)

Drug holiday 15 years or so. I have to look at the report for percentage. Will get back. Thanks

2024tymloshelp | @2024tymloshelp | Sep 5 1:03pm

I’m in a similar boat (1 year on Tymlos and no results shown on dexa!) so disappointed .
I didn’t lose anything but didn’t gain in bone numbers either .
My dr said to just continue it another year anyway.
I’m not happy with that explanation. I asked her to test my bone markers now - but if the bone markers were never previously checked, will that tell me anything ?? Please help if you have info

mayblin | @mayblin | Sep 5 3:07pm

In reply to @2024tymloshelp "I’m in a similar boat (1 year on Tymlos and no results shown on dexa!) so..." + (show)

Hi @2024tymloshelp,

Were you on any anitresorptives (like bisphosphonates, prolia, estrogen or evista) prior to tymlos treatment? Are you using HRT currently with tymlos?

Many members here do see bmd improvements on tymlos after the first year, especially in the lumbar spine. I'm sure there are exceptions. Hip and femur neck changes usually take longer.

The best time to see btm (bone turnover markers) response to tymlos is during first 1-6 months, but it won't hurt to check now. Doing both CTX and P1NP could give you better information, especially if the results come back very high or very low since you won't have a trend of change. In case you can't get lab orders from your doctor, you can self order (and self pay). The best price I've seen for btm is through JasonHealth website.

Typically, while on a PTH analog like tymlos or forteo, bmd doesn't decrease. I think its reasonable to continue another 6-12mo while aslo planning the next phase of treatment. Some people who don't respond to tymlos/forteo transition to Evenity and see successful bmd gains. In your situation, I wouldn't transition to an antiresorptive at this stage.

It's important to ask your doctor to rule out secondary causes for bone loss (parathyroid, thyroid, GI malabsorption, certain meds etc), which could explain the lack of bone gain while on an anabolic.

2024tymloshelp | @2024tymloshelp | Sep 5 3:48pm

In reply to @mayblin "Hi @2024tymloshelp, Were you on any anitresorptives (like bisphosphonates, prolia, estrogen or evista) prior to tymlos..." + (show)

Thank you for this insight ! Very helpful .
I was on HRT ( natural estrogen/progesterone) for 5 years prior to starting Tymlos .
I have never taken
A bisphosphonate.
Hmmm-
So maybe the estrogen ( even though not a bisphosphonate drug) I took halted my bone loss but then prevented the Tymlos from having a big hit impact ?
My spine is bad -3.5
And it didn’t budge so far on the Tymlos .

mayblin | @mayblin | Sep 5 4:15pm

In reply to @2024tymloshelp "Thank you for this insight ! Very helpful . I was on HRT ( natural estrogen/progesterone)..." + (show)

Just to clarify, are you still on HRT while taking Tymlos, or was it only before you started Tymlos?

What dose and form of estrogen were (are) you on? Thanks

2024tymloshelp | @2024tymloshelp | Sep 5 4:37pm

In reply to @2024tymloshelp "Thank you for this insight ! Very helpful . I was on HRT ( natural estrogen/progesterone)..." + (show)

I should add that I think I stopped the HRT about 5 months prior to starting Tymlos

2024tymloshelp | @2024tymloshelp | Sep 6 8:15am

In reply to @mayblin "Just to clarify, are you still on HRT while taking Tymlos, or was it only before..." + (show)

It was 0.5 estradiol gel ( topical applied to thigh)
That I used and I had stopped it prior to starting Tymlos

mayblin | @mayblin | Sep 6 9:50am

In reply to @2024tymloshelp "I should add that I think I stopped the HRT about 5 months prior to starting..." + (show)

Thanks for sharing. Unlike bisphosphonates, estrogen's effect on bone turnover is mostly reversible once it's stopped, usually about 6mo +/- depending on the source. Since you stopped HRT 5mo before starting tymlos, it's unlikely estrogen would still be having a major impact, though individual variation is possible.

In situation like yours, bone turnover markers checked at baseline and again a few months into Tymlos could give some useful clues. Too bad that's not part of standard care yet.

I really hope it doesn't cost you an arm and a leg to stay on Tymlos - pun intended, as the whole goal here is to reduce fracture risk and keep bone safe.

Please keep us posted on your decisions and how things turn out. Wishing you the best of luck with next steps.