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
@gravity3 thanks! doing two more months and then over to the Reclast!
Hello,
A few posts have been removed. I would like to remind everyone of the community guidelines, https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/, and remaining respectful. Disagreements are fine, but respect is a must.
It is important to remember that there is not always a 'one size fits all' treatment that works for everyone. Once a person is diagnosed with osteoporosis, a combination of diet, lifestyle change, exercise and medications can often be deployed to help halt the progression of the disease. When the disease reaches a serious condition, medications may become a must. It is important to have that dialogue with your provider to determine your risk for fracture. While side effects do exist for osteoporosis medications - the serious side effects are experienced by very few and can be addressed with your provider.
Unfortunately, online communities can sometimes amplify negative experiences more than positive ones because people tend to more easily look to others and support groups when they are experiencing side effects vs when the medications are working. This can sometimes create what appears to be an over-reporting of side effects.
Mayo Clinic has some useful information regarding supplements and osteoporosis treatments. It talks about how osteoporosis can involve many approaches to treatment including supplements, medications and lifestyle changes. It is important to keep your provider in the loop as some supplements may have interactions with certain medications. Here are a few resources:
"Osteoporosis treatment: Medications can help"
- https://www.mayoclinic.org/diseases-conditions/osteoporosis/in-depth/osteoporosis-treatment/art-20046869
-------------
"Osteoporosis: What Mayo Clinic experts wish you knew"
- https://www.mayoclinic.org/connected-care/osteoporosis-what-mayo-clinic-experts-wish-you-knew/cpt-20561803
-------------
"Bone health: Tips to keep your bones healthy"
- https://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/bone-health/art-20045060
-------------
"Mayo Clinic Q and A: Osteoporosis and a bone-healthy diet"
- https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-osteoporosis-and-a-bone-healthy-diet/
-------------
"Mayo Clinic Minute: What women should know about osteoporosis risk"
-------------
-
Like -
Helpful -
Hug
3 ReactionsThat is great news! Perseverance is key! Proof that changing mid-stream may not be the right thing to do! Thanks for sharing!
-
Like -
Helpful -
Hug
2 Reactions@mayblin I have two months left on the Tymlos then within 4 weeks I will have a reclast to lock in the results. The doctor said that the DEXA (even with the TBS) may have "noise" so don't worry about the 1st vs. the 2nd year. There were so many variables in the first year with titrating, my double cervical spine surgery and starting the BHRT that taking the two years together was what they look at. I'm so happy I'm getting through this!!!
-
Like -
Helpful -
Hug
3 Reactions@loriesco
I hope that you have great results with reclast as well. Please let us know. All the best.
@bswpb I honestly didn't know. but it seems I made the correct decision to stay the course!
-
Like -
Helpful -
Hug
1 Reaction@loriesco congratulations! Thank you for sharing the good news with us. It is inspiring.And also thank you for sharing what your doctor said. That all makes sense.
-
Like -
Helpful -
Hug
1 Reaction@miya19 happy to report back some good news!
Thank you for this post. Perfect timing for me, as I'm currently discouraged with the results of my past two P1NP to CTX ratio results that showed a consistent strong P1NP response, but my CTX sky-rocketed....hinting that my bone-breakdown/reabsorption is out-pacing my bone building (5 months on Tymlos, following 2 previously failed meds - Boniva & Evenity). This post was good to see, as an encouragement to "stay the course." No idea now what to expect on Tuesday's one-year-post-Tx start DEXA + TBS scan.
-
Like -
Helpful -
Hug
1 Reaction@cathyf31 have you previously had DEXA with the TBS or is this brand new for you? Because if the TBS is brand new, you won’t be able to actually be able to rely on the test either way you will have to wait till the second year. From everything that I’ve done and everything that I know after having unexpected fracture in my thigh when they did the joint replacement and the C5 cervical vertebrae fall apart in their hands unexpectedly just stay with it and keep on making inquiries of your doctors. God only knows why they don’t try to start us out at a more moderate dose on the RECLAST since it doesn’t change the outcome, but it definitely lowers the risk for side effects along with the other recommendations like slower, infusion time hydration and steroids plus NSAIDs. But yes, staying the course is the best you can do over the long-term if you are not having the outrageous side effects that all medication‘s can cause. I do my TYMLOS late in the evening so I am for less bothered by nausea, fatigue, and the other things. I am 69 and I have a lot of other issues going on like gout, arthritis, osteoarthritis, blood, sugar, dysregulation, hypo, and hyperglycemia, anemia, interstitial, cystitis, IBS, and digestive male absorption. Sometimes it is hard to tell what is causal. I had severe fatigue the last couple weeks. I went through all these tests. My cortisol and adrenal are low, but they say that’s normal. It turned out that it was actually allergies, causing the severe fatigue. My eyes wouldn’t stop watering and itching. My nose wouldn’t stop blowing and leaking. The allergy shots I had done for five years were off ANDI had a low-grade viral infection, . and that was the cause of my severe fatigue. NOT, the other issues and the medication’s.! sometimes it’s really hard to know with so much going on as we age.