What happens after Tymlos?

Posted by alknapp @alknapp, Feb 21 4:55pm

I’m going to be finishing the 18 month course of Tymlos in April/May of this year. Endo is saying that I should follow that with Prolia (within weeks) and then Reclast.

Has anyone else followed that treatment plan or have any comments about it?

Thank you.

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

@alknapp

Thank you all for the responses, they’re very helpful. A little more info. I’m 64 years old, have diabetes, and receive an immunosuppressant infusion for another condition. So I’m also concerned about suppressing my immune system too much by adding Prolia.

My endo has said that Tymlos is for 18 mos., but I see that a couple of you have done it for two years. Doc was almost adamant that I start on something right after Tymlos, and I get that. Eighteen months is almost up. Maybe I should ask about extending my treatment with it for a few more months and get a second opinion?

Thanks again.

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This variation in Tymlos timeframe puzzles me as well - some doc say 18 months. Others say it's a 2 year regimen. And I haven't heard any deeper details that explain what factors or influences determine the difference in treatment length. My doc definitely states "2 years".

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@katwhisperer

This variation in Tymlos timeframe puzzles me as well - some doc say 18 months. Others say it's a 2 year regimen. And I haven't heard any deeper details that explain what factors or influences determine the difference in treatment length. My doc definitely states "2 years".

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For me, blood markers showed it wasn't building bone much after 18 months but I continued to two years to maintain while I figured out next steps. (And I had trouble figuring out the actual start date due to variable dosing.)

Radius Assist, the company's assistance program, only covers 18 months.

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@mayblin

Hi @rajmayo22 could you keep us updated when you get your dexa scan after 2 years of tymlos? I'm curious to see if your previous 10-year on fosamax had any effect on the subsequent tymlos therapy. Thanks a lot!

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@mayblin, Good question, would be curious too! 🥰

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@windyshores

For me, blood markers showed it wasn't building bone much after 18 months but I continued to two years to maintain while I figured out next steps. (And I had trouble figuring out the actual start date due to variable dosing.)

Radius Assist, the company's assistance program, only covers 18 months.

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Sounds logical. My doc didn't measure blood markers, so DXA is my only intel, unfortunately.

Good point about Radius only covering 18 months. Will mention to my doc when they insist on 2 years. I had to fund a fairly hefty portion last year, even w/Radius help, since their savings card was depleted halfway through. I'll be at 18 month mark when this year's card depletes.

Thinking I'll just switch to a maintenance drug then, given the gains on Tymlos weren't that great (as per DXA) and my insurance doesn't allow Evenity.

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Plan to share my med info as I continue Tymlos until Aug 2024.

If anybody is interested, below are DEXA results showing 6 yr trend:

AP Spine (L1-L4) Statistically significant increase from previous scan.
07/27/2023 78 1.104 0.5 0.150 (15.7%)* 0.058 (5.6%)*
01/13/2022 76 1.046 0.0 0.092 (9.6%)* 0.032 (3.2%)*
12/01/2017 72 1.013 -0.3 0.060 (6.3%)* 0.060 (6.2%)*
10/02/2008 63 0.954 -0.8
*Denotes significance at 95% confidence level, LSC is 0.022326 g/cm2
------------------------------------------------------------------------

Total Hip(Left) Statistically significant increase from previous scan.
07/27/2023 78 0.800 -1.2 0.041 (5.4%)* 0.030 (3.9%)*
01/13/2022 76 0.770 -1.4 0.011 (1.4%) 0.013 (1.8%)
12/01/2017 72 0.757 -1.5 -0.002 (-0.3%) -0.002 (-0.3%)
10/02/2008 63 0.759 -1.5
*Denotes significance at 95% confidence level, LSC is 0.026675 g/cm2
------------------------------------------------------------------------

Femoral Neck(Left) Statistically no significant change from previous scan.
07/27/2023 78 0.607 -2.2 -0.008 (-1.3%) 0.008 (1.3%)
01/13/2022 76 0.599 -2.3 -0.016 (-2.6%) 0.011 (1.9%)
12/01/2017 72 0.588 -2.4 -0.027 (-4.4%) -0.027 (-4.4%)
10/02/2008 63 0.615 -2.1
*Denotes significance at 95% confidence level, LSC is 0.028808 g/cm2

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@rajmayo22 I am curious why you are doing Tymlos with those T scores.

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@alknapp

Thank you all for the responses, they’re very helpful. A little more info. I’m 64 years old, have diabetes, and receive an immunosuppressant infusion for another condition. So I’m also concerned about suppressing my immune system too much by adding Prolia.

My endo has said that Tymlos is for 18 mos., but I see that a couple of you have done it for two years. Doc was almost adamant that I start on something right after Tymlos, and I get that. Eighteen months is almost up. Maybe I should ask about extending my treatment with it for a few more months and get a second opinion?

Thanks again.

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Are you able to take HRT? @teb on this forum has maintained for five years after taking Forteo, I believe.

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@sallyj2

Are you able to take HRT? @teb on this forum has maintained for five years after taking Forteo, I believe.

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yes, that's correct.

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In last 8 years, I had two fractures, one at left wrist requiring a titanium plate and another hairline in left palm under a ring finger.

There is a family history of hunched back on my mother's side where those of my uncles and aunts lived past 90 had hunched back as they aged. (I grew up in India and came to the US in 1969 for graduate school.) My mother in her late 40's had bad hip and lower back issue and had to lie down during the waking hours in a boat like cast and laying on a back had her legs bend at knee were put in a sling and lower body was stretched by adjusting tension. (Her Ortho doc was a prominent physician in Bombay then.) My brothers and cousins in their 70s show some signs of hunch back.

Given the above, my PCP prescribed post menopause Fosamax treatment which I stopped after 10+ years (I didn't take any HRT) and my Endo suggested after thorough blood work Tymlos and it took me six months to agree.

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@katwhisperer

I wonder why so many docs push prolia over everything else, given all the drawbacks I've heard here? I'm still on Tymlos but dreading the decision on what to do next. My doc mentioned prolia too, but I'm going to seek another opinion. No way, no how will I go on that drug as someone in their late '50s. I'd have to be on it for what...like 3 decades? Crazy.

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Katwhisperer, I'm definitely not an advocate for Prolia. I had one injection, joined this support group, learned more about it, and refused to continue the treatment. On Prolia, I had side-effects---back pain, and significant hair loss. I have no intention of taking it again unless my hip were to lose a lot more BMD, then I'd have to weigh the risks vs the benefits.
I've just started Evenity instead. I think there are a lot of doctors who don't understand how Prolia works but are a bit free and easy about prescribing it. I continue learning, and now know that it can be used safely for short periods and actually improves bone quality a little bit. The most impressive thing about it is that it increases BMD at the hip by 5-6% with just 3-4 treatments. Evenity is the only other OP drug that can do that. I got this information from an interview of Dr. McCormick. I took extensive notes, so I'm confident that I'm passing on the information as he presented it.
For some people, Prolia is a good option if used correctly and followed with a bisphosphonate (Dr. McCormick recommends Reclast). The key is finding a doctor who knows when and how to use it.

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