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DEXA scores 2018-2025
I thought I would post my DEXA scores before and after treatments. I would say the results closely match my CTX and P1NP bone marker tests, which showed the most bone growth in the first 18 months of Tymlos, and basically things staying stable on 4 months Evenity and two low doses of Reclast. From 2015-2021 I was on letrozole for breast cancer which lowered bone density, and for various reasons I was not on Reclast during those 5 years, and was not medicated. I had traumatic thoracic fractures from 2006. I had osteoporotic lumbar fractures 4/2021. I did Tymlos fall 2021 to 12//23, Evenity 1/24-4/24 and low dose Reclast 6/24 and 9/24.
LETROZOLE 4/15-4/21
12/18 spine -3.4 hip -3.1 femoral neck -3.8
L1, L3-L4
LUMBAR FRACTURES L1-2, L5 4/21
6/21 spine -3.7 hip -3.3 femoral neck -4.1
L1-L4
TYMLOS 10/21
4/23 spine -2.5 hip -2.9 femoral neck -3.6
L2-L4
EVENITY 1/24-4/24; 1mg RECLAST 6/24 and 9/24
1/25 spine -2.4 hip -2.9 femoral neck -3.5 forearm -2.5
L3-L4
From 2021-2023 on Tymlos spine improved by 19.1% and hip improved by 9.4%. From 2023-2025 spine has improved by 6.7% and femur neck by 1.6%. Hip was stable.
The 2025 report notes that comparisons used adjusted values for the 2023 scan because L2 was used in that scan and fractures can make bones look denser. So the percentage change is more accurate in 2025 than 2023. However at worst the spine might have been more like -2.6 in 2023 rather than -2.5 (according to technician).
The technician made an effort to position me exactly as before in 2023 so the same "area of interest" was scanned. The 2023 scan was of a different area of interest than the 2021 scan.
Forearm was done due to the possibility that arthritis is making left hip look better than it is, but also so I have a basis for comparison in the future in case I have more lumbar fractures, which will make a spine scan useless. Forearm is cortical and technician was considering it a proxy for hip though the scores are very different.
Basically cancer made my bone density go down, Tymlos brought it up, and other meds have kept them stable.
I see my doctor in March. The time limit has not been lifted for Tymlos. Is anyone doing more than two years? I cannot tolerate Forteo and it looks like Tymlos is the best for me.
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Well done!
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1 ReactionNo progress since Tymlos ended, or very little. Hoping I can do Tymlos again but the time limit has not been lifted. Has anyone done more than two years?
I have a feeling I developed antibodies to Evenity.
If I can't do Tymlos my only option is to increase Reclast.
Is anyone even allowed to do more than two years from an insurance viewpoint? I know my insurer (Blue Cross) only allows two years of coverage.
Also, I'm not positive, but I don't think there are any clinical studies of taking it beyond two years. I wouldn't assume that if two years worked, then three is even better. Nobody knows.
I get it, though. This condition is certainly a situation where you may be damned if you do one thing, and damned if you do another.
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1 Reaction@njx people are doing Forteo for longer than two years, if they meet the criteria for lifting the two year limit.
I would not do Forteo or Tymlos for 3 consectuive eyars. For me, Tymlos stopped working by 18 monhts. Instead, it would be after low dose Reclast.
There are clinical studies on Forteo for more time, but I have been told that Radius is not going to put the time and money into studying this. Unfortunately I cannot tolerate Forteo.
I was on Forteo for 26 pens, then 2 months generic, now been on Tymlos 17 months through their assistance program, not through medicare at the direction of my rheum. Black label on forteo was lifted.
@windyshores your 2023-2025, remaining 6mo tymlos + 4mo evenity + reclast got you 6.7% gain in spine, right? That's pretty good I think.
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1 ReactionHi @garycorb did you go straight from Forteo to Tymlos? If not, what did you take in between the two meds and for how long? Thank you.
I did 13 weeks of bisphosphates, my stomach couldn't handle it. Stopped all for 1 yr, t scores tanked, so after I went on medicare, I was able to get the tymlos on their assistance progra., if not I couldn't have afforded tymlosor forteo on my part D plan
I see. It will be interesting to see how retreatment of an anabolic works out in your case. Keep us posted if you could of your dexa results at the end of tymlos. Thanks and best of luck!