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Disappointing update on Tymlos
Hi to all,
I'm following up on a post I did long ago about my good results on Tymlos after one year, when the scan showed that the hip T score was unchanged at -2.1 T score, but spine, the area of greatest concern, went from -3.3 to 02.6, barely osteoporotic. The femoral neck improved slightly, and the wrist measure actually worsened, from -3.0 to -3.8.
Well, now I'm at two years and am going off Tymlos. I had a DEXA scan this morning and got the results very quickly. And I'm pretty upset. Spine worsened to -2.8, hip worsened slightly to -2.1, wrist improved from last year but last year's score was much worse than before I started Tymlos, and femoral neck, after improving last year, worsened significantly and is now worse than when I started Tymlos.
In short, the only thing that's at all improved over these two years is the spine, and the improvement is small -- from -3.3 to -2.8. The other sites are in worse shape than when I started.
I have not missed giving myself the injection for even one day over these two years. So I'm pretty bummed. I hope all of you who are on Tymlos have better results than I did!
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HELP! I too am disappointed in my results after religiously taking tymlos for 8 months. I’m hoping someone here has experienced similar with opinions and research on what to do next. My bone markers are as follows: CTX 388 5/28/25, increased to 485 9/3/25 and increased again to 695 1/27/26, it is concerning that my bones are breaking down more than the Tymlos can help to rebuild them. On a positive note my PINP level has increased from 42 on 5/28/25, 85 on 8/3/25 and 97 on 1/27/26. On 7/22/24 but the dr. Is strongly suggesting I discontinue the tymlos. My dexa scores on 7/22/24 were lumbar spine -3.3 both hips -2.9 which was almost identical to my dexa in 2021 (I can’t find those results)
My endocrinologist wants me to start Prolia for 4 years and then follow that with reclast. I’m a 67 year old female and going on Prolia at this age is very concerning to me. My dr. is also going to consult with a medical consultant from tymlos and another endo who specializes in bone research before we make the final decision however, it seems as though he is really leaning toward the next plan of Prolia for 4 years and reclast. He is also trying to get me scheduled for another dexa before July. I’m concerned and looking for alternative ideas. I mean if I would have only done the P1NP which some docs do we would be happy with the increase. Some docs don’t even do or believe in the bone markers. There is such a mixed bag. I hope someone can shed some light. Thanks in advance.
@lurawilson I’m not sure this will be helpful to you, but as a single point of comparison my P1NP after 19 months on Tymlos (in August 2025), reached 166.7.8, but when it was tested in February 2026 (last month, tested two weeks after my last Tymlos shot), it had dropped to 116.5, good but not great.
Yet after two years my DEXA results were pretty disappointing. If a second DEXA doesn’t show at least some improvement in your scores, perhaps you can join me in the group for whom Tymlos turned out not to be miraculous after all.
Please understand that I have no medical training and that my opinion is worth exactly nothing. I have only my own experience to go on. But I think you’re smart to raise questions about where you go from here. You might give Tymlos a full-year trial; usually the gains in a second year are far less impressive than those in the first year. So, postpone a second DEXA until the one-year mark and take it from there?
@lurawilson P1NP is highly individual. Yours is improving, so I wouldn't stop taking Tymlos until you see what the next DEXA shows.
I've learned that the CTX blood test is very finicky. It has to be done first thing in the morning, fasting, because the number will go up during the day. I've had some odd results: 165 in September 2024, 404 (!) in January 2025, 178 in May 2025. I don't take it seriously. My P1NP was rising, and that is what I cared about.
I would not stop Tymlos until you get a DEXA result. That is the only test that matters.
@njx58 thanks for the input. I have always fasted prior to my bone marker labs and had the blood dry at 8 am give or take 15 min. I’m anxious to hear what my dr. has to recommend once he consults with his colleague and the tymlos medical people (not a tymlos sales rep) hopefully I can get a dexa scheduled in a few weeks but if not I do plan to stay on tymlos at least until July when my next dexa is due.
The dr. also said the protocol for prolia has changed but I can’t remember what he actually said. I need to clear that up.
I’m sorry the results were so discouraging. Did you stay on the full daily 80 mcg dose? And did you notice any side effects during treatment?
@truong62
yes I do the full dose every night at 10:00pm. As far as side effects for the first couple weeks I would sometimes have a dull headache the next morning.
Hello.....Just reading these comments and wondering if you took your shot within 24 hours of blood work, Dexa Scan or even mammogram? My doctor always says to skip that dose because it can affect the results of these tests.
@gowalking this is the first time I’ve heard this suggestion, and so the answer is that I did take the shot about twelve or thirteen hours before the scan. Tymlos passes out of the system quickly, so I’m not sure it could have affected the results. I can imagine it affecting some aspects of bloodwork, perhaps.
You can safely skip a dose of TYMLOS. Maybe do that before your next blood work and compare the numbers.
I usually take mine around 6:00PM but skip it the night before blood work, fast after midnight, get my blood work done in the early morning, then take my next dose of TYMLOS at 6:00PM
It would be interesting to hear if you had any changes.
I’m hoping to hear back from my dr. today! I have gathered more questions and will present this to him and ask to repeat my labs.