By what percentage did your T-scores improve after a round of TYMLOS?
I am trying to decide whether to make the commitment to try TYMLOS. I have read reactions to the side effects and some saying their scores did increase in this support group.
I would like to ask those that took TYMLOS reply to this post with percentage increase or their improved T-score. Likewise, if you didn’t seen any change (or decrease), can you let me know that too?
I am thinking that if the majority saw high improvement then maybe the side effects are worth it!
Thank you!
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@janism congratualtions! btw: do u recall your t-scores?
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1 Reaction@roseincalifornia yes, back -0.7, hip -2.5 and femoral neck -3.3.
@roseincalifornia
The middle scores on this report are the t-scores following Tymlos and the most recent are following Evenity. So, with Tymlos the spine went from -3.2 to -2.2, hip left from -3.2 to -2.8, and right from -2.8 to -2.5. There was further improvement with Evenity and I didn't experience side effects from either. Good luck on your decisions and results!
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4 Reactions@janism congratulations! The improvement in your scores are amazing!
@janism, this is such a wonderful success story for the Tymlos --> Evenity sequence. Thanks so much for sharing! I'm curious - were your bone turnover markers BTMs monitored while you were on Tymlos and/or Evenity? If so, would you mind sharing how they changed over time?
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1 ReactionAfter 10 months on Tymlos, my bone density per a REMS scan has decreased in my lumbar spine. At month 5, my L-1 reading was -3.3 with readings of -3.2 and -3.1 for L-2 thru L-4. This week, at month 10, I took another REMS scan (same machine and technician) and the results were so disappointing with worsening of the lumbar spine. Also the trabecular bone worsened somewhat. I had bi-lateral hip replacements years ago so no scan there. My cervical spine is also quite damaged from horseback riding fall of years ago, so DEXA scan does not read it properly. DEXA gave me a radius forearm reading of -3.2 before I began Tymlos. Will try another DEXA soon to see if the wrist has worsened but cortical wrist bone is a poor measure of overall bone health. I am continuing Tymlos for now but so very disappointed and not sure what else to do. Blood bone marker tests were okay with P1NP reaching 107 after 5 months. Doctor uses NTX rather than CTX for bone resorption measurement and it really jumped, maybe inappropriate ratio. I supplement but because of my damaged spine and neck, cannot do much in the way of exercise. Even walking on a treadmill ends in days of discomfort. At age 77, none of my doctors will agree to prescribe a low dose of HRT. I would like to try the patch. My endo claims she has not seen much in the way of bone gains from HRT. Appreciate suggestions, thoughts.
@willowmena You can't really compare DEXA and REMS scores.
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1 Reaction@willowmena, Tymlos results aren't usually measured so early in the treatment, because of the way it works. Bones require a collagenous structure to collect mineral. Tymlos, Forteo and to lesser extent Evenity actually rebuild that structure. These three also have the ability to restore the canals in the center and at the edges of bone that carry blood, nerves, and signals throughout the bone. To build that kind of structurally sound bone the damaged bone cells have to be removed.
It is said of Tymlos and Forteo that it is important to complete the full course because of the time it takes to complete the complicated process. It is the reason that Tymlos and Forteo are the only osteoporosis not implicated in osteonecrosis of the bone. You may well be losing bone mineral at this stage of the treatment. The forfeiture should result in stronger bone.
It isn't uncommon to lose bone mineral density in the hip and femur even after two years of Tymlos. Bone mineral content isn't really a measure of bone resilience.
I'm on my fourth year of Forteo. The dexa reports haven't given me any encouragement. I have confidence in the bone markers and they look good like yours do. I think that I have more bone that needs to be replaced and more canaliculi that need restoration than most patients.
Estradiol supports the cells that build bone , but its main protective mechanism is in slowing down the cells that remove old bone. Tymlos works by increasing both. So some endocrinologist think it is counterproductive. Our doctors are worried about the possibility that estradiol increases the risk of blood clots in those of us with the stiffer vascular systems.
Medicare is now paying for a new measurement of bone health VirtuOst BCT that you might request. https://ondiagnostics.com/patients/virtuost-vs-standard-bmd-test/ (thanks to babs10) I requested it instead of my upcoming dexa minutes after I read bab's post.
It's tough when you can't exercise without incurring days of discomfort. Physical Therapy might be help.
Your worry is sensible.
I just finished 2 years on Tymlos. In May, 2024 when I started, I had a t- score of -3.0 in my spine and my hip and femoral neck were okay. My DEXA in May, 2026 showed a 20% increase in my spine for a T-score of - 2.4 and based on this, I am out of osteoporosis category! I also have been doing 3/week weight training and resistance training and 3 mile brisk walks every day during the entire course treatment. I had recast infusion last week to "lock in" gains. I'll continue the exercise regimen and hope I can keep out of osteoporosis. Good luck and please keep us posted!
@sesameseedling Amazing! So interesting you were on Tymlos while technically not in osteoporosis category - where I live (Boston) doctors do not treat osteopenia.