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Reclast: Poor Result...Next steps
I'm female, in my early seventies, very active, no history of fractures or family OP. Have had two reclast infusions over the last two years (very mild side effects w/ first infusion). My Year 1 DEXA shows significant results - spine T score went from 3.0 to 1.4, hips from 2.7/2.5 to 2.5/2.3.
Doc was very enthusiastic with last year's results and said to do one more infusion, which I did a year ago. But I just received my Year 2 results (same facility, although with seemingly less experienced team): Spine - 2.8; Hips 2.5 and 2.4.
Endo's first reaction was that this year's scan was a 'fluke' and had positioning errors, but later said last year's might not be accurate. He gave me the choice of 1 year of Evenity followed by another Reclast, or 2-3 more years of Reclast. Awaiting CTX results - last year's number was 269.
What should I do? Second opinion from a different endo or a radiologist? Repeat DEXA?
I'm hesitant to do Evenity because my mom died of a stroke (although my heart health seems ok).
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That is exactly what I would like to find. I Dr. that listens! I keep saying I want to be a PARTICIPANT in my health care. Not a RECIPIENT. Good for you if you found somebody!!
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1 ReactionYes. agreed. P1NP won't tell you if your Osteoclast activity needs to be boosted. This is all backwards. Im only saying this because it is misleading information. I encourage people... patients... to look stuff up on their own. Not to randomly trust what somebody tells them in a discussion or anywhere else for that matter.
Even when I leave the Dr.'s office I research what I've been told. I have, on few occasions, taken some literature to the Dr. to ask about it. We are living in a time that is RICH with new advancements AND information at our fingertips. Literally. Word of mouth is like that "telephone" game we played as kids. I hope people check the facts.
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1 ReactionHi Everyone! @gently @mayblin @pauladiamante and anyone else who may be interested - Terry - I apologize that I still haven't read into your private message. its been a busy few weeks again! However, my FIRST DEXA comparision with TBS is hot off the press and I wanted to share! Maybe you can give me some incite! my CTX and P1NP was "right there" and I think my DEXA may be as well! One thing to tell people is to find equipment which uses the TBS software so the discrepancies are CONTROLLED! I learned that the hard way,
Also - I need to have TWO DEXA orders because I don't have hips and spine to test on like others... I have to remember to tell the team. Lucky the tech saw the order wasn't right. I am sorry to say I am at world class health care but it still doesn't mean they work at a level where I can take my own eye off the ball!
LUMBAR SPINE(L1-L2): The bone mineral density is 1.134 gm/cm sq.
Percentage of young normal mean is 97%. T-score is -0.3.
Percentage age-matched mean is 118 %. Z-score is 1.4 .
COMMENT: The lumbar spine demonstrates an interval change of 1.3% from the most recent previous study which is not a statistically significant change. L3 and L4 excluded due to surgical hardware.
RADIUS (33%) Right (wrist) : The bone mineral density is 0.709 gm/cm sq. Percentage of young normal mean is 81%. T-score is -1.9. Percentage age-matched mean is 97%. Z-score is -0.2.
COMMENT: The right radius demonstrates an interval change of -0.4% from the most recent previous study which is not a statistically significant change.
A FRAX score is not included because by NOF criteria, the patient does not meet all 3 of the following criteria. Postmenopausal women or men age 50 and older. People with low bone mass (osteopenia). People who have not taken an osteoporosis medicine . Furthermore, patient as status bilateral total hip arthroplasties. TBS score and Bone Resilience Index are unreliable due to postsurgical change.
I think I'm in a holding pattern Terry?!
I took a huge spill 3 weeks ago and broke my front teeth. (sidewalk panel was out of line from a tree root). I am not stopping my medicine for any reason. I don't think I broke or fractured anything except my two front teeth! Will have to get crowns. No meds for dentin! LOL
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2 ReactionsHi @undetectable I’m sorry that I’ve veered a bit off the purpose of the thread. While some here may have professional backgrounds, I think the purpose of this forum is to share support, information and ideas rather than to give/receive formal medical advice. As a fellow patient/member, here’s what I’d be thinking about:
The lumbar spine area is usually less prone to scan error than hips or femoral necks, so such a big change up then down there is unusual. Having a radiologist review all the scans could be helpful. A good first step is making sure the measurements were done for L1–L4 and not L2–L5, since that can make the results swing.
Average BMD gains during the first three years of Reclast are about 6–7%. Your first-year gains, if accurate, are really an outlier - which is another reason it may be worth a second look at the scans
It could be useful to talk with your endocrinologist about whether to continue another year of Reclast or consider switching to an anabolic therapy. Bone markers aren’t a standard part of care everywhere yet, but some doctors do use them, and they might help guide the next step.
In the end, it probably depends on how comfortable you feel after hearing both your endocrinologist’s and radiologist’s analysis, a second opinion may or may not be necessary.
Wishing you get things sorted out soon! Please keep us posted about your journey.
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6 ReactionsI am so so happy for you!! Thank you so much for sharing ! CONGRATULATIONS!!!! YOU ROCK!!!!!
Good idea!! A radiologist re-read! Makes sense!
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1 ReactionWell done. loriesco. It been quiet a struggle.
Did you have bone markers since May.
Not the ankles this time. That must have been a hard fall; your neck survived the impact.
Even the teeth hasn't daunted your enthusiasm.
Cheers.
undetectable, it's very confusing that neither you nor your doctor can trust either dexa. I would want the doctor to pursue the accuracy.
Your doctor might be thinking that you'd want to continue a medication for osteoporosis despite the accuracy of the results.
I do wonder why the anabolics-- Tymlos or Forteo haven't been part of the discussion about medications from the beginning.
It is safe to guess that you are having a good response with Reclast. And you can guess that a third year would be helpful.
Getting a second opinion from a radiologist or even questioning the radiology office where you had the scans could be a struggle. It is a struggle you shouldn't have to handle.
I see Forteo as more advantageous for your bones than Reclast.
Could you share more details on this new product? “ A product that does BOTH build new bone AND slow the breakdown are the newest on the market. And are titrated by watching this wax and wane.” I’m really interested in learning this product! I have pretty severe osteoporosis and really need to improve my bones badly.
Thanks!
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1 ReactionGreat questions, gently. At the time I started Reclast my doc thought that would be enough because I hadn't fractured, my hip scores were borderline osteopenia, and I'm active for my age. Doc now admits we should have considered Tymlos, Forteo or Evenity, but he normally prescribes them for patients with more advanced conditions and numbers.
He has spoken to the radiologist who thinks 2025 was accurate and 2024 was a positioning error. We're waiting for my CTX score and then will decide next steps.
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