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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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undetectable, I'd get a P1NP to see if your osteoclasts need some encouragement. Then I'd take advantage of any mistake on the dexa and ask the Doc for a prescription for Forteo. Forteo rather than Tymlos because your spine holds the low number.
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2 ReactionsHmmm... ??? P1NP measures osteoblast activity... so explain how that will tell me if my "osteoclasts need encouragement"? TY
Forteo wasn't mentioned as an option, and neither was P1NP. Will ask my doc, who is now saying that the spine score last year had to be in error...I'm confused about this whole turn of events and want to get an opinion from a radiologist before proceeding.
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2 ReactionsCTX and P1NP are useful in tandem.
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1 ReactionYes CTX is the breakdown molecule.Osteoclasts are responsible for the breakdown.
P1NP is the evidence of building Osteoblasts build.
Since bones are a living organ system they should be continuously "remodeling". Responding to the environment. Turning over new bone. Breaking down the old. While making new.. just like your skin does every day. That's the problem with prolia and the bisphosphonates. They stop the breakdown. So the CTX is very low. But it's old brittle dead bone piling up. 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.
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2 ReactionsSince gently keeps tabs on both markers during and off therapy, I'm pretty sure she knows what she's saying - if anything, her wording might just invite more interpretations than she intended haha.
“ 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.”: That's interesting. Would you mind sharing the source? I'd like to read up on it. Thanks
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3 ReactionsActually, Having been to medical school I am very certain that I know the difference between osteoclasts and Osteoblasts. Just sayin'.... Don't believe everything you read.... You are invited to check my facts.
I am doing my research on Medications, since I am not an endocrinologist and this discussion site has really helped direct my reading and learning. Iam very grateful for that.
For Example, Look up the mechanism of action of Fosomax, it will increase the new bone formation (Increasing the P1NP) AND decrease the bone breakdown (lowering the CTX) and both those numbers can be followed for titration of medication. PRETTY COOL!!!
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2 ReactionsAround 2017, after (I think) five Reclast infusions, I had a DEXA that indicated that my T-scores had improved somewhere into the stratosphere. My doc felt no additional Reclast infusions were indicated and this was pre-Tymlos/Evenity. So, new insurance company, new doc . . . and two years later my doc reads my DEXA and says that the 2017 scan must have been wrong (same machine, by the way) because a gain such as I had was pretty much impossible with Reclast and that my T-score was now back to that 2015 "normal". I really wasn't expecting much in the way of gains with Reclast as my doc told me it was just to keep things from deteriorating further so I was ecstatic.
It would be great if a doc sees something on a DEXA that looks abnormal/unusual, an additional scan could be ordered to verify. My doc told me that bone grows very slowly, so that should have been a trigger for the previous doc who didn't question the significant, and I mean significant, gains in the 2015-2017 DEXA numbers.
Why are we not entitled to a "second opinion" lab or diagnostic when we see squirrelly (no offense to squirrels) numbers or info on labs that look like they just don't belong? I think I finally found a doc that will listen . . . yay for me!
Hoping I don't fracture jumping down off my soapbox! Cheers, all!
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2 ReactionsI’m familiar with the mechanisms of action for osteoporosis drugs and with how markers like CTX and P1NP (which can be nuanced) are used in monitoring, which is why your earlier comment caught my attention. I’d really appreciate a reference for the product you mentioned that both builds bone and slows breakdown - I’d love to read more about it. Would it be Evenity you’re referring to, which was approved back in 2019? And to be clear, I have no doubt about your understanding - nor about gently’s, given how closely she’s tracked her own markers for quite some time.
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2 ReactionsNo doubt you're all credentialed and experienced. What do you experts suggest for me, once I get CTX/PN1P results:
- redo DEXA (all were done at same place, same machine)
- get second opinion from radiologist
- get second opinion from different endocrinologist
- take Evenity for a year, then one more Reclast
- have one more Reclast infusion (#3) then reassess next year
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