By what percentage did your T-scores improve after a round of TYMLOS?
I am trying to decide whether to make the commitment to try TYMLOS. I have read reactions to the side effects and some saying their scores did increase in this support group.
I would like to ask those that took TYMLOS reply to this post with percentage increase or their improved T-score. Likewise, if you didn’t seen any change (or decrease), can you let me know that too?
I am thinking that if the majority saw high improvement then maybe the side effects are worth it!
Thank you!
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I had a 17% increase in both spine and hips after 13 months of Tymlos. At 2 years my dexa showed no further improvement in the spine. My hips were not able to be scanned due to hardware in both hips so I don’t know if there was further improvement or not. Tymlos was my first osteoporosis drug and was definitely worth it. I asked for a third year but my endo refused. My follow up drug is alendronate.
I did have some side effects that I could live with such as elevated heart rate for 30-45 minutes after injecting.
You can always try it and start at a lower dose to see how you feel. The pen is adjustable even though your doctor may not know this :). In the beginning, I also had headaches which went away within a week or two.
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1 Reaction@gently I wonder if the test you mention can accurately read my damaged spine? The DEXA cannot. Hips are replaced, so that is not an option either. I've had lots of physical therapy. I was supposed to receive "guided" steroid injections but cancelled when the pain abated after I became largely sedentary. But that is not a solution and physical therapy always wakes up the pain. I likely need disc surgery at C-5-C-6. There is little help for my neck injury at C-1/C-2. Surgery is inadvisable. I've seen 4 neurosurgeons. So my spine is certainly the issue and altho' bone density is not an overnight improvement, I did not expect to lose more after 10 months of treatment. My resorption number jumped, I think, too high in proportion to my P1NP number. NTX tripled, while P1NP doubled. I will see if my endo agrees when I meet w/her next week. Need to renew the Tymlos prescription at that time. I expect an insurance denial again, and an appeal. Thank you for your very thoughtful response.
@willowmena The REM scores are not accurate. There was a recent study done which showed REM is not an accurate tool for measuring true bone density. Do a google search to find this study. DEXA is not a perfect measuring tool, but it is good enough.
See my post:
https://connect.mayoclinic.org/discussion/tymlos-results-from-dexa-scan-after-12-months/
Please do not discontinue the tymlos. My endocrinologist said she has never seem someone who took it whose bone density did not improve. It is also very important that after 24 months of tymlos, you take a bisphosphonate to lock in the gains, otherwise they will be lost.
I know your situation is more complicated than most, but I hope you are seeing a good endocrinologist. Best wishes to you, and keep us up to date on your progress!
@roseincalifornia so what does work if REM is not accurate and DEXA is not available for someone with my spine damage? Did I read something about a CAT scan or some alternative method for measuring bone density or trabecular bone health?
@willowmena You have posed a very good (and hard) question. According to Gemini:
Evaluating treatment response typically involves a combination of imaging alternatives and biochemical markers:
1. Alternative Imaging Options
Hip-Only DEXA Scans: While a full DEXA evaluates both the spine and hips, a damaged spine often skews results due to artifacts like hardware, severe degenerative changes, or compression fractures. However, a hip-only DEXA remains fully valid and interpretable. Because anabolic medications like Tymlos increase bone mineral density systemically (though to varying degrees), tracking changes at the total hip and femoral neck can provide a reliable proxy for overall skeletal response.
Quantitative Computed Tomography (QCT): QCT can assess volumetric bone mineral density (vBMD) specifically at the spine or hip. Unlike a 2D DEXA projection, QCT software can isolate specific vertebrae or avoid damaged areas, though it involves a higher radiation dose.
2. Biochemical Bone Turnover Markers (BTMs)
Because Tymlos is an anabolic (bone-building) therapy, it stimulates bone formation significantly faster than it stimulates bone resorption early in the treatment course. Blood or urine markers can show whether the medication is actively engaging bone metabolism within weeks to months—long before a density scan can register a change.
Formation Markers: Tests like P1NP (Serum procollagen type I N-propeptide) typically rise sharply within 1 to 3 months of starting an anabolic drug, confirming that the bone-building cells (osteoblasts) are responding to the treatment.
Resorption Markers: Tests like CTX (Serum C-telopeptide) measure bone breakdown. While formation should outpace resorption on Tymlos, tracking both gives a complete picture of bone turnover dynamics.
3. Clinical and Functional Tracking
Height and Posture Monitoring: Severe spinal damage often stems from silent micro-fractures or structural collapse. Tracking height accurately over time and noting any stabilization in posture can help clinically indicate that vertebral integrity is being maintained.
Incident Fracture Assessment: The ultimate clinical goal of Tymlos is fracture reduction. Vigilant tracking of new pain episodes or structural changes via diagnostic X-rays (when clinically warranted) helps ensure the spine is protected.
Are you seeing an endocrinologist? or bone specialist? They should be able to give you guidance also.
@willowmena Your P1NP reaching 107 after 5 months is a really good sign that Tymlos is working.
@roseincalifornia Yes I have an endo, but she may not be thinking "outside of the box". She has been my thyroid dr. for years but not clear about her bone expertise. Tried a so-called metabolic bone expert with Univ. of Miami and was very disappointed. Ordered no new blood or urine testing and suggested a new DEXA in January, this after I emphasized that my spine is too damaged for an accurate DEXA assessment, and I had bi-lateral hip replacements in 2017. Some doctors just don't listen. Maybe it is too soon to expect results from Tymlos, but losing density and trabecular health was not what I expected.
I have just been diagnosed with severe osteoporosis with a T-score of -3.3. I have a 15% chance of fracture over the next ten years. My doctor and Endo are recommending either Tymlos, Forteo or Evenity. Then 5 years of oral Fosomax or 3 years of Reclast. I am freaking out. I am 62 with all normal labs. This was my first DEXA scan. I have never had a fracture and I am very active and eat really healthy. I have never smoked and drink very moderately. Has anyone with osteoporosis stabilized their T scores without medications? I am really struggling to know what to choose. People say 3x weekly weigh bearing exercise, Tai Chi K2 supplements etc.. can help. Any suggestions?
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2 Reactions@willowmena I know when I got my REM scores after 12 months on Tymlos I was very very upset because it showed a loss in bone. I even considered stopping the Tymlos. Fortunately, I waited for my DEXA results which showed a 10%+ increase in my spine. I understand you have an issue where a dexa scan may not be possible. I am just asking u to be very skeptical of the REM scores. You have a great P1NP score which shows there is a lot of activity in your bones. I am not a doctor but from talking to one, and reading a lot of other people's experiences with Tymlos, it is extremely likely that your bone density is increasing, not decreasing. I hope you continue looking for a bone specialist or endocrinologist who treats bone disorders. My endocrinologist moved so I am looking for another one, and just had an appointment with a well known endocrinologist (bone specialist) in LA. She was terrible - abrupt and dismissive. Now I have to look for another one, so I know it is a real headache to find a good doctor, but please don't give up. A lot of them have long waitlists - new patients have to wait 6-12 months - but if u call them every week you might be able to get in on a cancellation. I really wish u the best, and please keep us all updated on your progress. Take care.
@tulipandrose29 When I was 60, my T-score was -3.1, I was so shocked and upset. I have been active my entire life and eat very healthy. After hearing about my diagnosis, I have done a lot of research and do not think it is possible to reverse severe osteoporosis with just exercise and supplements. Be aware that there is a lot of mis-information on the internet - people saying they reversed their osteoporosis through supplements and exercise, Please find an endocrinologist who treats osteoporosis. Fracturing may lead to serious disability. It is really worth it to treat it now and not wait for a fracture. Good luck to you.