Disappointing update on Tymlos

@daisylou Thanks, daisylou. Basically I don't have any really good options. I took Prolia in the early 2020s for a couple of years and had improved DEXA scores everywhere but in the spine (which has always been my biggest concern). For some reason (I don't remember why), I switched to alendronate in March 2023 but had to stop it because my GERD became unacceptably bad. Then in October 2023 came a compression fracture at L1 after a terrible fall.

I began Tymlos in January 2024 and in the first year had small gains in my spine and held steady everywhere else. And now it's time to stop the Tymlos.

My options were basically Prolia or Reclast. My endocrinologist said that in many ways they're biosimilar, but she believes that Prolia is more effective at retaining the gains, such as they were, from Tymlos. So it's back to Prolia. I had no side effects whatever when I took it; the problem is stopping it should that become necessary. But I"m quite old, and she basically says that I'll stay on it for the duration, barring some kind of special circumstance.

As I"ve said before, most of the options for women with osteoporosis all have serious drawbacks. The anabolics are probably the best, but they're hugely expensive (even with insurance they cost me thousands each year), and even they don't always work as advertised (I'm living proof of that). What a mess!

Good luck to you!

@anewyorker Come and live in Australia - My prolia costs me $7.70 every six months. If you're a senior the most you pay for a prescription is $7.70 and sometimes you get 2 months at once for the same cost. Yearly infusions cost the same. So sorry you're having these problems. I don't know what could be in store for me in the future as 74 and now been on Prolia for 3 years. Never had a fracture and I'm fit and healthy but who knows. I hope things go well with you and the Prolia as if you didn't have a problem with it previously you should be fine. Love from Oz.

Do you know if they combined the score with bone quality? If bone quality is low, forgot the name for that score, the overall Dexa score will be affected. Happened to me. When I looked closely at the Dexa scan only, it showed improvement.

I showed no gains on Tymlos during the first year (I have written about my experience on earlier entry).
I am in the second year now and will have a new DEXA in september which will be interesting. I will report on that when I get results. I was on HRT from age 59-63. My gynecologist stopped the HRT after 5 years just to keep cancer risks low? Anyway, I started Tymlos when I stopped HRT last year. There has been No bone loss-all is stable (If I had done nothing I would've continued to lose bone) But I was disappointed that I saw no DEXA gains from Tymlos. My Prescribing doctors (I got two opinions from bone"experts" both said maybe in the second year I'll see a gain in spine or hip. I will be faced with what drug to take next this fall.
I hate all the side effects of all the drugs and dread it. Question- since I am only 65- if I do Prolia do I have two take it rest of my life??!!

Do you know if they combined the score with bone quality? If bone quality is low, forgot the name for that score, the overall Dexa score will be affected. Happened to me. When I looked closely at the Dexa scan only, it showed improvement.

@2024tymloshelp as @anewyorker noted, you don't have to stay on Prolia for life, but you will need to take an antiresorptive (Reclast is commonly used) if you stop. I don't know for how long it's recommended to take an antiresorptive after Prolia; it may depend on how long one has been on Prolia. In my view Prolia is a drug best left to later in life when you won't need to worry about transitioning off of it. I'm 70 and I won't consider taking it until I'm at least 80.

I'm pretty sure some people go on to another anabolic if they don't do as well as hoped with the first one. I haven't searched the threads yet but seem to recall discussions about that. I've been away from the boards for awhile but have started reading again now that my own journey with Forteo (teriparatide) is soon coming to an end and I'll be facing my own decision about what next after I see the results of my DEXA later this month. Currently my plan/hope is Reclast followed by a drug holiday.

Can you refresh my memory - did you take an anabolic first? And when you are done with it what are your plans ? Which drug next ? Since you said your young age too young for prolia , will you do recast or something else to lock in whatever gains you’ve had from anabolic ?

@2024tymloshelp I first took alendronate for 3.5 years. No improvement (but no loss either). I then went on to Forteo/teriparatide (I've been on both the brand and generic, with changes due to insurance coverage) which I've been on for 17 months. Being on an antiresorptive first will probably mean my gains with Forteo will not be as good as if I had not done an antiresorptive first. I'll soon find out with my March 11 DEXA. If I've had good gains, my drug choice to lock in gains is Reclast. If I haven't had good gains, I want to explore the possibility of going on to Evenity, another anabolic that works to stimulate bone growth but in a different way than Forteo. I want to achieve as much bone growth as I can before "locking in." I have an appointment with my new rheumatologist next month to discuss options.

@ekorre I think that you are referring to Trabecular Bone Score (TBS) ?