Just Finished 18 mos on Tymlos and....

Posted by sbt54 @sbt54, Mar 16 8:51am

I finished 18 months on Tymlos on Feb. 25th, 2024.
I'm very disappointed with my follow up dexa results.
4.8% worsening of left hip
4.2% worsening of right hip
5.2% improvement of lumbar spine
My Dr. says I definitely grew bone back even though it doesn't show.
I just don't understand.
I'm going back on Actonel monthly.
Anyone have any imput?

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babs10 | @babs10 | Mar 17 9:04am

In reply to @sbt54 "Thanks for the reply. I don't know what bone marker testing is, so no they didn't..." + (show)

One is the CTX and one is the P1NP. They measure the levels of the different bone markers in your blood or urine to determine how active your osteoclasts (type of bone cell that breaks down bone tissue) and osteoblasts (cells required for bone synthesis and mineralization) are.

mayblin | @mayblin | Mar 17 10:07am

In reply to @sbt54 "Hmmmm. I will definitely look into that. Will I need to re-scan or just have re-read?..." + (show)

Not rescan. Re-read. If your report has a TBS score, you could also take a look and see if it had improved. Mine improved to lower end of normal range which at the time gave me some assurance.

Not sure about tymlos (I've read a lot about forteo), forteo is known to cause porosity in cortical bones and reduce femur neck's bmd a bit, but this effect plus the slight effect in bone structure increase (I forgot the technical term) may actually maintain or increase the strength of cortical bone, it was postulated.

windyshores | @windyshores | Mar 17 10:37am

In reply to @mayblin "Not rescan. Re-read. If your report has a TBS score, you could also take a look..." + (show)

I have been told that Tymlos is slightly better than Forteo for cortical bone, or rather, less likely to cause a loss.

doglover1962 | @doglover1962 | Mar 17 10:59am

Please see my latest comment below. Still good increase in your spine!

doglover1962 | @doglover1962 | Mar 17 11:41am

I'm sorry to hear the disappointing news. It is my understanding that Tylmos and Forteo are good at building bone in the spine more so than the hip. Who knows what will happen to me when I start Forteo soon. I need it more so for my spine rather than the hip. Gotta keep that in mind. Thank you for sharing your results.

Michael Lavacot | @michaellavacot | Mar 17 2:09pm

Hi SBT54 - Would you mind sharing your T-scores both before Tymlos and after Tymlos? Also, were you on a bisphosphonate before you started Tymlos?

mayblin | @mayblin | Mar 17 8:39pm

@sbt54 after reread your original post, I have more questions if you don't mind answer. Were you on Actonel before you took tymlos? If yes, how long have you been on actonel? Did you take the regulat release or delayed release actonel? Thanks a lot