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Results after 2 years post-fracture and change in treatment approach
I know that many of you are interested in hearing about results of treatment protocols, particularly those that involve the anabolic medications. I'll try to keep this short and to the point.
To set the stage, I was first diagnosed in 2014 with osteopenia in my hips and spine. I was advised to manage my condition by taking calcium supplements and vitamin D. I had already been on HRT for 2 years, starting at age 51. I had a family history of "brittle bones" on my paternal side with my dad having fragile bones and multiple compression fractures starting in his 50s. I was physically fit and performed regular exercise including lifting weights 3 times per week. No other risk factors like low body weight, smoking, or excessive alcohol consumption.
My first DEXA scan in 2014 showed the following T-scores:
Spine -1.3
Left hip - 2
In 2018, my scores had deteriorated to the following:
Spine -2
Left hip -2.8
I was started on Fosamax and told to continue the calcium and vitamin D. I had DEXA scans every 2 years.
My scores improved over the next two years and in 2020 these were my scores:
Spine -1.5
Left hip - 2.9
I continued on Fosamax for the full five year recommended period with my T-scores changing little.
In December 2023, I fractured T8 while bending over a bathtub while pressing down hard on my ribcage. I did not suspect a vertebral fracture at all and went for 3+ months before seeing a doctor. The fracture was discovered on x-ray and had already healed.
At this point, I was referred to a rheumatologist and started on Tymlos, which I took for 4.5 months until my insurance company pulled my pre-authorization.
My t-scores in 2024 were
Spine -2.2
Left hip - 2.8
I was switched to generic teraparatide but was unable to continue due to constipation. At this point, I requested that my PCP refer me to an endocrinologist associated with the Stanford bone clinic. She ran a number of tests which had never been done before and started me on Evenity. I just had my 11th shot two weeks before my latest DEXA.
I have also been taking a small dose of Vitamin K2 MK4+MK7 and also took Fortibone for about 9 months during the last year (recently stopped). I've continued to lift weights and added more impact exercise during the past two years.
How did all of this impact my bone density as measured on DEXA? Here are the results from my scan last Thursday:
Spine -1.5
Left hip -2.8
Right hip -2.9
To conclude, there was no change in hips and a 9.8% increase in my spine, restoring me to the same score as 2020.
Honestly, it was a lot of work for only moderate results. I am not surprised as I am one of those who was on a bisphosphonate for a long time before an anabolic and it's known that blunts the effect of an anabolic.
Another wrench in the works is that I was recently diagnosed with hypercalciuria which has probably been playing a role in my osteoporosis for over a decade. At least that is now being addressed with a medication to control the calcium loss in my urine.
Overall, I am happy with the results and will continue to do what I've been doing lifestyle-wise. I will do the recommended two years of follow up Reclast then will take a break from all medication and see how I do.
The best news is that I haven't fractured again and that is really the only metric that is truly important.
I have enjoyed participating in the forum and learned a lot from all of you over the past two years. I'll probably take a step back for a bit but may drop in from time to time to share any additional results I have over the years.
Now I just need to lose the 8 lbs I gained during the time I took the anabolic medications! Will keep you posted as I know some of you are interested whether that happens after you stop.
Best wishes to all of you!
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I spoke to another Integrative Medicine doctor today to see what his recommendations were. When I told him I was just put on HRT (just a few weeks ago) at 71 he said that there is a greater risk factor for Alzheimer's starting HRT after 60 and suggested I get 2 blood tests to see if I have PTAU 217 in my blood. He also suggested adding testosterone to the estradiol and progesterone. My other doctor said she had heard the opposition--HRT helps stave off Alzheimer's. Any thoughts?
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1 Reactionoopsiedaisy, thanks so much for the update. It's encouraging to see your success! Bless your heart.
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2 ReactionsOopsiedaisy,
Thank you for your words of wisdom; please do chime in when you can.
Best wishes for strong bones and sunshine! Happy trails and cheers! ❤️
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1 Reactionoopsiediasy, thank you so much for taking the time to share your detailed journey. A near 10% gain in L-spine, especially after prior bisphosphonate use, is certainly meaningful; and most importantly no new fractures - which is what's truly matters!
The recent diagnosis of hypercalciuria is particularly relavant in terms of underlying cause, and i wonder if your father might have had something similar in retrospect.
If you don't mind sharing, were you on HRT continuously through fosamax and later during anabolic phase (tymlos/forteo and evenity)? And do you plan to continue it while on reclast?
Also curious if your bone turnover markers were followed and how they trended.
Really appreciated you sharing this - it's very helpful for others navigating the ins and outs of osteoporosis management.
@mayblin Thank you for your note. I do wonder if my dad had hypercalciuria as well as it does have a genetic component. As far as I know, no one else in my family on both my maternal and paternal sides have had osteoporosis and this includes many female cousins and aunts.
I have been on HRT since 2012 so yes, I was on it throughout my medical treatment. I plan to remain on it for the rest of my life if all goes well.
I've only ever had my CTX tested once by my current endocrinologist when I started seeing her last May. It was around 350. I just had my blood drawn for another CTX level this morning so it will be interesting to see what it is.
Glad that sharing my experience may help some people.
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1 Reaction@pbradley1954
This is what I learned about HRT and Alzheimer’s; I am 69, never was on HRT previously because of what was thought harmful treatment when I started menopause. I now have significant osteoporosis in my spine, but don’t want to take the medications because of possible side effects. This past year when black box on HRT was lifted I discussed going on HRT with my GYN, to keep my osteoporosis from worsening. I was 11 yrs post menopause and did start HRT, but my GYN warned there is research showing an increase risk of Alzheimer’s. I started researching this topic on my own and found that all studies showed when HRT was started perimenopausal, or before 10 yrs post menopause, or before 65 yrs old, HRT could lessen risk of Alzheimer’s. However all studies I could find, stated if HRT started > 10 yrs post menopause or > 65 yrs old, there was a 38% higher risk of developing Alzheimer’s. That scared me enough to stop my HRT treatment.
Hope this helps to clarify HRT treatment and its affects for Alzheimer’s risk.
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4 Reactions@oopsiedaisy thanks for sharing those helpful details.
Interesting about your family background. Sometimes those patterns do make us wonder. Not sure what's driving your hypercalciuria, but hopefully with it now being addressed, it will make managing your osteoporosis a bit easier.
I was especially interested in your use of HRT, mainly from a future planning perspective in case i ever need additional rounds of anabolic therapy. I've been curious whether combining them or sequencing them differently makes a difference, so it's helpful to hear real world experiences. Thanks again for sharing.
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1 Reaction@pbradley1954 You can also have your DNA tested to see if you what your genetic risk tendency is for Alzheimer's disease. The key gene is APOE and the higher risk variant is APOE-4 of which you can have zero, 1, or 2 copies.
In 2024 on a Black Friday sale I had my whole genome sequenced for about $300 at sequencing.com. The price is now up closer to $400. I wanted to see what risk factors I might have for anything, but especially BRCA1/BRCA2 as my mother had ovarian cancer. Later I found out about APOE-4 and so also know what my genetic risk category is for AD. I also had my PTAU tested.
Keep in mind APOE is just one factor in AD risk. You can have only the good variants of APOE-2 and still get AD, or you could have 2 copies of APOE-4 and never develop AD. Also, do your own research to verify what I or anyone writes 🙂