Just Finished 18 mos on Tymlos and....

The lumbar spine is good and the rest is really disappointing! Gosh. Did they do any of the bone marker testing along the way?

@sbt54 if you did a bisphosphonate first, it may have blunted the effect of the Tymlos somewhat, but you got improvement in spine. Could you do Evenity to try to help the hip? I believe Evenity is better for cortical bone, so maybe that could help. Alendronate might help too but it is limited in total time for use. We are all in such a bind and between a rock and a hard place.

@sbt54, i think it’s worth looking into your Dexa results, before and after tymlos.

I had a similar problem like yours, but i was on forteo. At one year of treatment, my spine had an expected bmd increase, but hip and femoral neck had almost close to 8% decrease. Later my endo looked into it and we also had the results reread. It turns out there were technical errors which underestimated pretreatment hip/femoral neck bmd, the follow-up scan wasn’t done ‘perfectly’ either. Essentially my hip and femur bmd stayed the same, not a decrease.

Hip and femur neck scans are prone to errors, so you might want to keep that in mind.

Good point @mayblin. I was told that different "areas of interest" may be focused on and affect comparisons. Also my reports always say that the femur neck scores are not reliable for comparisons. Hope that @mayblin's insights end up helping you!

I'm recently diagnosed with O and numbers were 3.8 on scale of 4 being the worst Dr said. I started Fosamax against my better judgement but was told medicare wants you to start there and go on up to a better drug... ieore expensive? Love to know of others experience on Fosamax. Thanks!

@hipgranny1956 if your DEXA score was - 3.8 (is that what you meant?) I would hope you could take a bone builder like Tymlos, Forteo or Evenity. Fosamax increases bone density but does not build new bone, and it can affect the effectiveness of the bone builder meds.

Do you see an endocrinologist? Maybe the doctor could advocate with insurance. Also, some companies have financial assistance and even free medications if you meet income guidelines.

Unfortunately -4 is not the worst! But -3.8 should merit a better drug.

Thanks for the reply.
I don't know what bone marker testing is, so no they didn't do it.
Can you please explain?
Thanks

Thanks for reaching out.
I read conflicting points of view of doing Evenity right after Tymlos. I will however discuss it with my rheumatologist. I'll keep you posted.

Hmmmm. I will definitely look into that. Will I need to re-scan or just have re-read?
Thanks.

@sbt54 would love it if you would share whatever info you have found on Evenity after Tymlos. I found one study comparing Evenity after alendronate, after Forteo, and for those who never took anything. I have not seen anything negative and would love to read it if you found it.