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DEXA results after mostly partial Tymlos dosing
A few people have asked me to post my DEXA results since I did not do a full dose of Tymlos (except for a few weeks in March). I started Tymlos in September 2021 at two clicks and moved up slowly to 6 clicks and mostly stayed there. For maybe 6 months I did 7 clicks, and only a few weeks at 8. I have been on Tymlos for 18 months (and still have two pens left!). My doc may want me to use those two pens, or he may want me to do a test dose of Reclast (1/4 dose) to assess that approach to "lock in" gains. I may also ask about Evenity. Here are my results, better than I expected (I have 7 past spinal fractures).
INDICATIONS FOR TEST: Osteoporosis, Tymlos, H/O fracture
Findings: L 1 excluded from analysis
Region T-Score
AP Spine -2.5 (2021 was -3.7)
Femoral Neck -3.6 (2021 was -4.1)
Total Hip -2.9 (2021 was -3.3)
Additional data on Z-Score and BMD in g/cm2 is available by clicking the image.
World Health Organization criteria for BMD interpretation classify patients as:
Normal (T-score at or above -1.0)
Osteopenic (T-score between -1.0 and -2.4)
Osteoporotic (T-score at or below -2.5)
At this facility, the least significant change in BMD with 95% confidence is 0.025 g/cm2 at the L1-4 spine, 0.026 g/cm2 at the total hip, and 0.029 g/cm2 at the femoral neck.
Today's examination is compared to the technically similar prior study of 6/12/2021. The % change in BMD since the last examination is as follows:
AP spine 19.1
Total hip 9.4
IMPRESSION:
Based on BMD, diagnosis is osteoporosis. Marked gain in BMD as noted above.
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Your posts are very helpful. I have severe osteoporosis and am looking to start an anabolic. Thought it may need to be Evenity as was told Tymlos and Forteo do not help hips only spine. So, I was encouraged to see your increases in the hip area.
Please keep posting.
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2 ReactionsI was told that Tymlos is better than Forteo for cortical bone (hip/femur neck, wrist etc.) I am doing Evenity after Tymlos to try to get extra oomph but was happy with the improvements in spine, hip and femur neck on Tymlos. Spine improved 20% from severe osteoporosis to borderline and hip down to -2.9 makes me happy. I had an easier time tolerating Tymlos than Evenity: everyone is different.
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4 ReactionsI am so glad to hear of the spine improvements on Tymlos, since I just started it because my spine has degenerated to -3.6 after five years on risedronate (bisphosphonate). Did you also do a lot of weightlifting, walking etc? I have just started some weights. I've always walked a lot, and was a runner until a few years ago, but that didn't seem to be enough to prevent the decline in my spine.
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2 ReactionsI would not go near weights, myself. My DEXA was almost the same as yours but I have fractures. I walk and before COVID did tai chi. I suspect, for me, that weights and exercise aren't big factors in my bone loss. Menopause and cancer meds. I had my 20% gain without undue attention to diet or exercise. I just walked every day. I hope this helps you not stress over this and that you are careful with weights! ps I took 3000 units of D3 because I read that Tymlos eats D3- and my level stayed the same throughout. I took 800mg calcium because my levels tended to be over 10. I cannot eat dairy.
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3 ReactionsHi windyshores! As letrozole for ILC has put me into osteoporosis with one year my doc wants to start me on Fosamax. At 58 yrs I’m nervous as will need 5 yrs-you mentioned Fosamax was not typical “first line” treatment? My endocrinologist said Fosamax or Reclasr! No mention of Tymlos or Evenity? Thoughts? Xo
hi @semurrey most people doing aromatase inhibitors do Reclast or Zometa. My oncologists wanted Reclast, In the context of cancer treatment this seems best! If you are sensitive to meds, you can ask for a partial dose more frequently. It sounds like your bone density loss is not severe yet-is that true? Reclast may have some preventative action with cancer: I read one study (a long time ago, sorry can't cite) about how the combo of AI and Reclast eliminated cancer cells. Reclast also sort of blocks metastasis in bones (doc can explain this!). If bones get worse, later on, you can do a bone builder and it will still be about 2/3 effective (I read) vs if you had never done Reclast but still very helpful. Discuss this with your doc: I only go by my experience and what I have learned for my own case.
Thanks!
I was told tymlos can’t be given in smaller doses so glad to hear it can… what happens to the medicine that is unused? Is it still in the pen? I am a very small, thin woman, and would like to take a very small dose to start with.
@curious6 even those of us who are small, should aim for the full dose. The low dose can be a way of introducing the medicine to your body but you could try a half or even full dose first if you want to, then back down to 1/4 and ramp up.
The pen is supposed to last 30 days. If you keep it in the refrigerator it will last longer. Doing partial doses makes it necessary. I have checked with doctor and pharmacy on whether it is okay to use it longer than 30 days and it is, as long as it is refrigerated.
I just started Tymlos a week ago with full dose. Awoke with muscle cramping in legs. I never considered a partial dose but will try this. Also I may not be taking enough calcium and but D