Scared by latest DEXA showing severe osteoporosis. Need advice.
I'm a 73 year old woman diagnosed with osteoporosis in 2017. (I am petite, 5’2” and 112 lbs and have heard that may affect DEXA score accuracy.) Since 2017, my DEXA’s every 2 years stayed quite consistent. However, my latest DEXA shows a significant decrease in BMD, and it scares me.
2024 Total Hip: -2.7 (2021 -2.4, 2019 -2.3, 2017 -2.2)
2024 Femoral Neck: -3.0 (2021 -2.5, 2019 -2.7, 2017 -2.4)
2024 Lumbar Spine: -3.9 (2021 -3.2, 2019 - 3.3, 2017 -3.2)
I've never broken or fractured a bone. I take calcium, vitamin D and collagen peptide supplements every day, but have never been on any prescribed drugs for osteoporosis and especially would like to avoid bisphosphonates. I know my endocrinologist will pressure me to take something. At my last visit, he suggested Reclast. The many side effects of this drug concern me, especially lasting bone and muscle pain. I have fibromyalgia, so already have daily body pain, sometimes severe, so I worry about increased pain from a new drug and/or a fibro flare.
I think two reasons for my recent low DEXA scores is that two years ago I was diagnosed with fibromyalgia, which has limited my physical activity, and I started taking a daily PPI. I have tried to wean myself off the PPI, without success, but will try again. Also, for many years I've had a thyroid condition and have taken Synthroid.
Will I have to take some kind medication for my bones? I would appreciate any advice. I see my endocrinologist in two days.
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gently, are you taking forteo over 6 years or is that a typo?
If I'm reading this correctly, your sequence is:
1. 1 yr Forteo --> with 1 Reclast infusion to lock gains
2. immediately followed by another 2 yr Forteo --> with 1 yr alendronate
3. another x yr Forteo? --> was there another follow up med here?
leeosteo, I've been looking for an endocrinologist sufficiently curious to find out if a patient could take Forteo forever.
I meant to write that three different physicians made three different suggestions. The endocrinologst treating me was intrigued by the concept and agreed to staggered use of Forteo. But at the end of the appointment said, "but only after 2 years of Forteo and 1 year of Reclast." I've only finished one year of Forteo. I have a year to find find someone or go rogue.
Forteo is my first pharmaceutical. I wasn't reluctant to take it, may have been eager facing possible fractures. I was quite surprised that it was such a friendly drug.
Mind, though, I haven't had a followup DXA. Could be the joke's on me. There could also be another better drug (or they'll find out that Evenity is senolytic or doubles brain size and power.) My plan is to stay on Forteo with pharmaceutical free breaks inbetween.
Sorry to be unclear.
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They are also studying using Evenity in short bursts between other meds, since the potent bone growth happens in the first 4-6 months.
(There is another study comparing 6 months Evenity, 18 months Reclast vs 12 months Evenity, 12 months Reclast, and a few other combos. This is because Evenity is primarily anti-resorptive in the last 6 months. And Reclast is anti-resorptive so the question is, can it substitute for the last 6 months of Evenity?)
I am hoping Tymlos will be freed from the two year limit!
Windyshores, your thoughts. Reclast after Prolia makes sense to me (though the use of Prolia does not). But why is Reclast prescribed after Evenity. Evenity is antiresorptive in the last six months so wouldn't a body be better served by an anabolic?
@gently my doctor told me they aren't really sure how Evenity works. But they do know that it's anti-resorptive properties don't "lock in" gains from its anabolic action.
I think the effects of sclerostin inhibition are still not well-investigated and I believe Evenity isn't even a strong anti-resorptive (I have to double check that chart on CTX in last months) so there are mysteries here.
I don't think any research has been done on Forteo or Tymlos after Evenity. I was initially told that I could do Evenity after Tymlos or Forteo but not the other way around. At one point I read that the reason for this is that Evenity is so potent that there is little left for the other drugs to do.
I have only seen videos relating to Evenity after Tymlos or Forteo, never the other way around. We need more research!
If I decide to take Tymlos or Forteo -- do I have to follow that with Reclast? I'd really like to avoid taking that drug because of the side effects. I already have daily pain from fibromyalgia and don't want to take any meds that will cause more pain. Thanks.
So much advice, making me very confused. I have my appt this afternoon with my endocrinologist. Were any of your spinal fractures "silent"? My Dr said there's no such thing.
At some point along whatever drug journey I go on, will I eventually have to take Reclast or are there other choices? When you take Reclast, will you always do a low dose, or will you make that decision based on how you react to it? Thanks.
The other choice so far, to "lock in" gains, is Prolia, which you can take for a long time, but if you ever go off, you have to do Reclast!
Sorry to be confusing!
You can do Tymlos, Forteo or Evenity. See what insurance will cover. They are all good and help a lot 🙂
It sounds like you are saying that, whatever I do, I will probably have to take Reclast or Prolia at some point? Are those the only two drugs that "lock in" gains from the other 3 drugs you mentioned? Thanks so much.
ripley, you don't have to follow Tymlos or Forteo with Reclast. A bone expert who advises me suggests(Actonel) risidronate--a daily or weekly pill with lower adverse event profile. He says risidronate clads to the bone less fiercely than Reclast zolendronate. And so would have less of a blunting on a second round or either Forteo or Tymlos.
Forteo and Tymlos have a slower loss of gains than other anabolics and (it is said) the loss is never greater than baseline.
Anyway you'd have two to three years to decide how to follow the anabolic. And there may be a slew of new choices by then.
I hope you have a good appointment. What ever you decide upon today with your endocrinologist, you can always change your mind. Remember to ask for bone markers.
We'll respect your choices and can't wait to hear.