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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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There may be a confusion between [Fosomax] Fosamax (approved in 1996) and Evenity the last osteoporosis medication approved by the FDA in 2019.
MHRA, the UK equivalent for drug approval in the UK approved Eldynos ( abaloparatide-- US Tymlos) in 2024
I'm not aware of any osteoporosis medications "titrated by wax and wane," though the markers are used in determining if a medication is working.
There is a person on this site that seems to be on attack mode when I comment. So, I prefer not to share here any longer. Evenity and Tymlos both have anabolic action (promoting bone formation) & have been FDA approved for over the past 5 years. In Drug world that's still pretty new as they are collecting data for long term outcomes. There are a couple new drugs in the pipeline that I for one was wondering if I would be a candidate for clinical trials! I think if you do a search for "Osteoporosis Drugs Mechanism of Action" you can get a lot of good information that is probably more reliable than word of mouth. I have seen some misinformation here and although this site has opened my eyes to some topics of interest, I truly recommend that you do your own research. I am not able to post a link here, But I will say that the NIH website is one that is trustworthy.
Wishing you well.
This may or may not be the product. Note that it is in the early (mice) stage. Oral verion of Forteo and Tymlos
https://www.massgeneral.org/news/press-release/new-oral-compound-may-help-prevent-and-treat-osteoporosis
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2 Reactionspaula, no matter what path you take everyone here will be rooting for your bones. It may be that we just aren't saying what you'd rather hear. I haven't read any personal attacks against you, just honest assessments of ideas.
If any of my posts were offensive to you, I'm more than happy to delete them. If you find anything offensive, please contact staff by clicking the three dots at the end of each post.
It would be more interesting to me if you did have bone markers and wait to see if they reflect need for a pharmaceutical. It would be a great clue to the mysteries we are trying to unravel.
I've seen a number of endocrinologist and none have given me only one choice of medications for osteoporosis. I did think you were referring to the lastest drug Evenity and agree about its amazing bone building capacity.
The drug njhornung links finished stage 2 trial successfully in 2024and might be an option for in coming the stage 3 trials.
If you haven't seen the Nancy Lane video, the whole thing is interesting but at she talks about a possible treatment for osteoporosis at 44:28. https://www.youtube.com/watch?app=desktop&v=XtMSWGltKPw
@pauladiamante, I noticed that you wished to post a URL to an article with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.
"Sclerostin Inhibition: A Novel Target for the Treatment of Postmenopausal Osteoporosis"
- https://pmc.ncbi.nlm.nih.gov/articles/PMC8849148/
Osteoporosis medications are strong medications that carry both powerful substances to help with a tough diagnosis, but also powerful stigmas regarding side effects that vary greatly for everyone. As members do their research and talk with their providers to find the best treatment for them, it is important we keep the community guidelines, https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/, in mind.
In particular:
2. Remain respectful at all times.
Exercise tolerance and respect toward other participants whose views may differ from your own. Disagreements are fine, but mutual respect is a must.
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1 ReactionI had significant gains on Evenity with few side effects.
sandrac, thanks for the update. If you want to post them, it would be interesting to see the numbers. Did the hives ever just stop? Have you decided what you will take next. Does your doctor advise you if you can or can't take a brief break.
Did you also have Reclast first? Reclast is supposed to lesson Evenity's effectiveness.
Hi everyone, so although my CTX and P1NP were exactly at the "benchmark" in June my second comparative DEXA with TBS software analysis was "disappointing." I only had a 1.3% gain in bone density where my team expects 6 -8% in my lumbar (L1-L2) this year. I had a slight decline in my radius (wrist). I had one reclast and then almost a year and a half of TYMLOS. They are going to check with my Orthopedic doctor and if it is okay they will move me to EVENITY. My NP said that this happens (although I never thought it would happen to me!) that people respond to different drugs because of the mechanisms being different. Since I get my healthcare at UC Health (a medical research university center) I'm going to trust that they have a large pool of patients to draw from for successes and failures on the bone med protocols. I like to finish what I start, but if we need to change-up and there's something better than I'm game!