Connect
Tymlos results 2nd year DEXA scan results a SUCCESS!!!
Hi everyone! I want to report a HUGE success in my second-year DEXA scan with TBS!!! I had one Reclast with horrid inflammatory reaction but I'm going back to LOCK IN my results! i will take precautions of a smaller slower dose this time around. But after 1 year of Tymlos with very disappointing results (I think it was from injecting in my thigh).
I was STRICT in the second year of injecting in my tummy area. The docs wanted me to change to Eventity but I said NO I want to finish the Tymlos. They also said the second year is expected to be even lower than the first but they were WRONG. My second year caught up nicely and I am SO GLAD I hung in there! Its impossible to understand the assessment so I copied into Google which uses an AI model and this is what I got. Yay, yay, YAY!!!! So hot off the press I am sharing it with you first!!!
"Your DEXA scan shows that you have low bone mass (osteopenia), but there is very encouraging news: your overall bone density has improved SIGNIFICANTLY since you started tracking it. Because of your prior hip replacements and spinal fusion surgery, the radiologist had to adjust how they measured your bones. Instead of looking at the standard areas (the hips and the lower part of the spine), they evaluated your forearm (radius) and the upper part of your lower back (L1-L2).1.
Your Diagnosis: Low Bone Mass (Osteopenia)Your formal classification is based on your lowest score, which comes from your right forearm. Right Radius T-score (-1.4): A T-score compares your bone density to that of a healthy young adult. A score between -1.0 and -2.5 is classified as osteopenia, which means your bones are thinner than normal but not in the osteoporosis range.
Lumbar Spine T-score (0.2): This upper section of your spine actually shows NORMAL bone density.
2. The Big Win: Your Bones are Gaining Density. Because you have a history of taking bone-building and bone-protecting medications like Tymlos and Reclast, looking at your progress over time is incredibly important.
The Spine: Since your baseline scan in 2024, your upper lumbar spine DENSITY INCREASED 6.1%! The radiologist noted that this is a statistically significant improvement, meaning it is a true gain in bone strength, not just a minor testing variation!
The Forearm: Your forearm density increased by 6.2% since last year. While the math shows a jump, the machine considers this specific area's change "not statistically significant" yet, but it is moving in the right direction.
3. Understanding the Surgical Workarounds: Hips: Both hips were skipped because your joint replacement hardware blocks the X-ray from accurately reading the actual bone. Lower Spine (L3-L4): These vertebrae were skipped because your spinal fusion hardware similarly interferes with the scan.The Solution: Because your spine is difficult to read due to the fusion, the report explicitly recommends that your future follow-up scans continue to use the Radius 33% (forearm) site to accurately track your bone health over time.
Direct Comparison Overview: To help you easily track your values, here is how your two evaluated areas compare:Skeletal Site Evaluated, Your T-Score (What It Means, Progress Over Time):
Lumbar Spine (L1-L2) 0.2Normal bone density 6.1% increase from baseline (Significant gain); Right Radius (Forearm)-1.4 Low bone mass / Osteopenia 6.2% increase from last year (Positive trend)
I have always felt that my inflammatory reaction occurred because my body was working hard in the areas where I had the most arthritis and vulnerability so I hung in there. I've had other experiences (like with joint viruses) where I had severe inflammatory reactions while the medicines were doing their job. So I thought this might be the same. I see the doc on Thursday, and I will report back if there is something further to add. Stay with it because there is nothing else that I know of for older women that can add those kinds of numbers to bones! I already ate well and exercised. I took biological science in college, so I always took care of my body and had a sense that this IS the way to go. Warts and all! @gently yay Terry @mayblin @njx58 @heyjoe415 Celebrate with me!!!
Like
Helpful
HugInterested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
Connect
Hooray 🎉 Bravissimo!!!
Wonderful to hear such good news. Enjoy your success and celebrate.
-
Like -
Helpful -
Hug
1 Reaction@loriesco
I posted specifically why Radius Tymlos currently has protocols requiring abdomen only. If it was acceptable to inject other areas don’t you think Radius/Tymlos would say that?
The conclusions of the research studies with this particular drug have to follow how it was done in the studies to minimize variability…I think you did the right thing following Tymlos guidelines…even my doctor said I could inject other than my abdomen…my sister is a research doctor as well as another researcher at a very well know hospital…they explained it.
This does not mean that it isn’t effective but perhaps to a lesser degree…it’s true there are many other subcutaneously injectable’s that can be injected in more variety of locations …they were studied that way to aide in patient compliance…Tymlos was not studied that way.
“Step 14. Injections should be given in the lower stomach area (abdomen). Avoid the 2-inch area around your belly button (navel).
For each injection, change (rotate) your injection site around your abdomen. Talk to your healthcare provider about how to change (rotate) your injection site for each injection. Do not use the same injection area for each injection. Do not inject into areas where the skin is tender, bruised, red, scaly, or hard.
Avoid areas with scars or stretch marks.”
At least it is not posted by Radius on their website or if you ask their nurses they will not be allowed to tell you any other protocol than the abdomen…unless that changed recently…Hope this finds its way to others.
-
Like -
Helpful -
Hug
1 ReactionDarn! I just began my second year of Tymlos and due to the tummy weight gain I decided to start injecting into my sagging wrinkled thigh. I guess I better go back to my stomach!
-
Like -
Helpful -
Hug
3 Reactions@osteopatient2026 i’m sorry to say you did not post “why “ you only posted “what” was published.. In none of what you wrote, and in none of my research, could I establish “why”thigh subcutaneous injections were not acceptable. We do not know the science behind the WHY. We only know that they tested on abdominal area subcutaneous injection alone. That answers HOW. Logic dictates that there must be a difference between subcutaneous thigh versus abdominal area injections. Today I have found no difference.. In addition, your rush to judgment is missing some science to conclude that there IS a difference! In one hour, I will meet with the team endocrinologist doctor and I will be asking these questions. if we find out that others injected in their subcutaneous thigh area and had the expected response, then we will have to conclude that there was some other reason for which I wasn’t adequately performing in the first year.
In my case, there are many variables. I had a major double cervical spine surgery, which may have impeded my success the first year on TYMLOS. Also since limited mobility excluded me from accessing my abdominal area, the thigh was recommended. better to do it the thigh area, my doctor recommended then not at all. In addition, maybe that BHRT fully on board after the first year might’ve made the difference in the second year. I presume that the UCSD endocrinology department has pursued this so they wouldn’t recommend something that didn’t work, they are World class and teach the next generations of doctors. but I could be wrong so I will definitely make that a priority in our discussion today.
I do not give the TYMLOS people a huge amount of credit either. Their ability to contact me with science and knowledge based info/doctors was nonexistent. The best I got after months of investigating was a tolerant person who was tasked to call me back from Brazil. Patiently we worked together to only determine that nothing can be concluded when there is no clinical trial that investigated anything but the abdominal subcutaneous area. I will definitely see if I could add more to this puzzle. Like I indicated once before, there was information I had come across in my initial startup with the medication that had indicated that subcutaneous thigh injections were appropriate. When I went back to find that published information there was nothing to be found. subcutaneous thigh and abdominal injections are considered
. I know you feel strongly about this, but part of my modus operandi is to look at the largest science model I can find for reference, to work with my doctors recommendations, to challenge science, and to do my own research. Having had more than my share of medical misdiagnosis I can become obsessive about research. Ithas served me very well to identify things that doctors overlooked and incorporate alternative method science, medication‘s and procedures. In the end, there may have been nothing causal linking my switching back to the abdominal wall and it may be about the hormones, the time of day and refining my process in the second year. we shall see! I have no problem being wrong. I want you to know that as well. And I appreciate the discussion.!
-
Like -
Helpful -
Hug
3 Reactions@lurawilson I will ask the doctor this morning. I would suggest the tummy unless I find out the results are the same from both. UCSD is a major hub so I would think they wouldn't have recommended it if they saw that people weren't responding. We'll see!
Congratulations for advocating for yourself and achieving good results by staying on your path to better bone health. You should be very proud of yourself!
-
Like -
Helpful -
Hug
1 Reaction@lurawilson
An endocrinologist or doctor who is knowledgeable and understands pharmacology (mine did not) should be able to explain why it’s important. Other drugs don’t all have this requirement.
@loriesco
Radius invented it…so I would think the “logic” is with them of administration of it…but choose your own path…
There is a lot advice here that is helpful and some that is just “bad advice” mostly from well intentioned individuals…
I just posted what is from the Tymlos website. That doesn’t explain your how, why’s, etc. that takes years of schooling or at the very least a lot of foundational study in the scientific method and the variables that occur and why they strive to minimize them…like injecting in one known area that is consistent in the study being conducted.
@osteopatient2026 I spoke with my lead doctor today. He said that whether the results happen in the first or second year is not a major concern. They did inquire if I had wanted to switch to Evenity in the first year with the more dismal results and I said no. I will finish my two pens left and then go for my Reclast infusion (with adjustments) because I had an extreme inflammatory response (variety of reasons - like surgery) maybe being so close which contributed to my poor reaction. He clearly indicated that whether the injections were in my tummy or thigh was not indicative of anything. Results were in line with what they wanted over the two years. We discussed the "noise" present in the DEXA scans (I've had them for 30 years, annually) and they are just a guide for trends and possible interventions. Both my orthopedic spine surgeon and my bone med doc don't put a lot of weight in them. They use xrays, mri's ultrasounds to really give them an idea of density and quality. A DEXA only measures a couple bones. The issues we may have can be in bones not measured in the DEXA and those bones may have different densities! So you guys are stuck hearing from me for another year! 😉
-
Like -
Helpful -
Hug
4 Reactions@lurawilson okay, I asked! They noticed no difference in test results. My suggestion is to discuss with your doctor whether they notice any differences in your test results. My doctor (at a big health, research, and educational institution felt we are too much in the "weeds" about what we are trying to get from this. I used some leftover pens before tossing them in the first year, maybe that was the problem. I had to titrate up in the beginning. And I was out of a double cervical spine surgery and the estrogen may have helped in the second year. But honestly, he wasn't so "plus'd" by the lower result in the first year compared to the better result in the second year because we give too much weight to the scoring and results. it is the overall success or failure of the two years that matters.
-
Like -
Helpful -
Hug
1 Reaction