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One Year Update
After one year on TYMLOS (80mg/daily, no side effects) and a weight and resistance training program 3day/wk, my DEXA results showed a 5% improvement in spine. Hips are good and 0 improvement. I went from -3.0 to -2.6 in spine so still osteoporosis. I was very disappointed since the gains can be as much as 20% and I think 10% is more common. The question now is do I continue for another year? I welcome others experiences. Most of the gains are in year 1. The good news is while I have always been athletic and fit, my weight and strength training program has been transformative! I am now up to 39 "real" pushups (in 3 sets) and love the resistance training at the gym. I am trying to remember how good I feel I've never been so strong and fit and at 66yrs! but I can't deny the disappointment in the DEXA. Prior to this, I had 4 recast infusions and they kept the T score stable - I never improved so TYMLOS helped a little. Not sure what endo (who is awesome and trying to be encouraging about results) will recommend for next steps and what is best way to lock-in results either now or in a year. I welcome any thoughts and experiences before my endo meeting next week. I also want to mention - since TYMLOS absorbs Vit D, I was on 5000 daily for a year. For the first 6 months that dose kept my D at 45. I just got tested and the D went up to 70! This is way too high so ofc stop supplement, over hydrate to flush it out, and have very few food sources of D for 4-6 weeks until it can come down. (I eat a lot of fish). I think this demonstrates the TYMLOS is losing its effect since it is not absorbing the D any more. Not sure what my endo will say. Thoughts? Thank you to everyone in this group!
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Congratulations on seeing improvement! Bisphosphonates like Reclast can suppress or delay the effectiveness of anabolics like Tymlos if taken before. If I were you, I would persist through the second year of treatment.
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1 ReactionInteresting! Thank you so much for your encouragement. Do you know how long reclast stays in your system? My last infusion was 2022.
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1 ReactionVitamin D is not the marker they use to judge Tymlos effectiveness. P1NP is. 5000iu daily is a lot, and I think you just reached the point where it was too much and your body started to store it.
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1 ReactionGood to learn! My p1np the week before the dexa was 162. Thank you.
I looked it up and Reclast half life in the skeleton is 360 days. That means that half of it is still in your bones after a year, 25% after two years, 12.5% after three years, etc.
Once released from the bone through bone breakdown, bisphosphonates circulate in your blood stream and are reabsorbed by your bone where they suppress bone breakdown (and subsequently bone formation) again.
It looks to me like Reclast does not stay in your bones for as long as alendronate which has a half life of 10 years.
So, it seems to me that you are better off than someone who took Fosamax for years before starting on anabolic therapy.
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4 ReactionsP1NP really varies by person, but 162 sounds like a good number to me. Do you know what it was prior to starting Tymlos?
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2 ReactionsIt was 82 at start of Tymlos. Which is high to begin with, but 3 months later only went to 84 when most people see a huge jump. at 7 months it crawled up a little more to 92 and at 12 months, a big leap to 162. So it took me a while for the TYMLOS to kick in per this one marker which doubled in the year. I think given the half life of Reclast, @oopsiedaisyward was so kind to inform us of, at least 25%+ was still in me at the start of treatment - maybe that's why it took so long to get that number high. I talk to endo on June 2 and will report what she says about numbers and continuing. I suspect she will encourage me to stick with it since I was a slow starter.
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