Scared by latest DEXA showing severe osteoporosis. Need advice.

Posted by ripley @ripley, Apr 28 4:22pm

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

ripley,
I wanted an anabolic because it builds bone, instead of preserving older bone. In building bone it remodels our bone according to our activities acually realigning the spicules for the best flexibility and resistence to fracture.

The bisphosphonates prevent remodeling, by accretion give you ischemic bone, weaker bone that is unable to repair itself, and blunt the effect of anabolics if taken first.

This left me with three choices: Forteo, Tymlos or Evenity.
Evenity begins as an anabolic then continues as a an antiresorptive. It is a newer drug with black box warnings about cardiac issues. It is a monoclonal antibody which blocks the sclerostin pathway. The effects of the the blockage of this pathway will be born by the bodies of souls brave enough to take those risks. I'll wait, realizing that the number one cause of death in the US is cardiac event.
Tymlos is a close choice and is thought to have slightly better bmd results. It can be given in adjustable doses. Our impeccable source of information and experience here is windyshores. (She invented the system of gradual dosing.) She'll be around any minute to tell you the other side of the story. I depend on her.
I chose Forteo over Tymlos because the prescribed dose is lower. Forteo 20mcg Tymlos 80mcg. And windyshores hadn't invented or hadn't revealed her clever method. And because Forteo has been around maybe 20 years longer with a great effectiveness record.
Some people have side effect with one , other or both Tymlos and Forteo. But the are eliminated from your system within 24 hours, so you aren't stuck with adverse effect the way you are with Reclast and Evenity.
The usual course with both drugs is two years.
Suggestions among the endocrinologist advising me are 1 year Forteo followed by Reclast, with resumption of Forteo 2 years Forteo followed by one year alendronate and resumption of Forteo. 2 years Forteo 1 year Reclast 2 years Forteo. No one advised Reclast first, Prolia ever or Evenity before real life trials.
Forteo lowers blood pressue in the first seconds after the injection. In some people it can cause headache or dizziness. I was careful in the beginning because my bp is already low. I took blood pressure measurement and sure enough my systolic dropped from 100 to 80, but I never felt it. No headache, no loss of balance. I've had no side effects, except my nails which I keep short are hard to clip.

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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?

REPLY
@leeosteo

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?

Jump to this post

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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@gently

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.

.

Jump to this post

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!

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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?

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@gently

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?

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@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!

REPLY
@gently

ripley,
I wanted an anabolic because it builds bone, instead of preserving older bone. In building bone it remodels our bone according to our activities acually realigning the spicules for the best flexibility and resistence to fracture.

The bisphosphonates prevent remodeling, by accretion give you ischemic bone, weaker bone that is unable to repair itself, and blunt the effect of anabolics if taken first.

This left me with three choices: Forteo, Tymlos or Evenity.
Evenity begins as an anabolic then continues as a an antiresorptive. It is a newer drug with black box warnings about cardiac issues. It is a monoclonal antibody which blocks the sclerostin pathway. The effects of the the blockage of this pathway will be born by the bodies of souls brave enough to take those risks. I'll wait, realizing that the number one cause of death in the US is cardiac event.
Tymlos is a close choice and is thought to have slightly better bmd results. It can be given in adjustable doses. Our impeccable source of information and experience here is windyshores. (She invented the system of gradual dosing.) She'll be around any minute to tell you the other side of the story. I depend on her.
I chose Forteo over Tymlos because the prescribed dose is lower. Forteo 20mcg Tymlos 80mcg. And windyshores hadn't invented or hadn't revealed her clever method. And because Forteo has been around maybe 20 years longer with a great effectiveness record.
Some people have side effect with one , other or both Tymlos and Forteo. But the are eliminated from your system within 24 hours, so you aren't stuck with adverse effect the way you are with Reclast and Evenity.
The usual course with both drugs is two years.
Suggestions among the endocrinologist advising me are 1 year Forteo followed by Reclast, with resumption of Forteo 2 years Forteo followed by one year alendronate and resumption of Forteo. 2 years Forteo 1 year Reclast 2 years Forteo. No one advised Reclast first, Prolia ever or Evenity before real life trials.
Forteo lowers blood pressue in the first seconds after the injection. In some people it can cause headache or dizziness. I was careful in the beginning because my bp is already low. I took blood pressure measurement and sure enough my systolic dropped from 100 to 80, but I never felt it. No headache, no loss of balance. I've had no side effects, except my nails which I keep short are hard to clip.

Jump to this post

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.

REPLY
@windyshores

It is hard to answer generally because we all seem to tolerate different drugs differently. For me, Tymlos was a godsend, because I am sensitive to meds and could adjust the dose (and ramp up slowly). The half life of Tymlos and Forteo is one hour so they are gone very quickly. Many doctors seem to be going to Evenity first but I also felt nervous about it two years ago. I have now done 4 months of Evenity (the time when it is most potent for bone growth) and will now go to a low dose Reclast in two months (with IV hydration and slow infusion).

If your DEXA scores are just over the line of -2.5, you may be able to try holistic methods, and it is even possible that Fosamax could help if you will never need bone builders. At a certain age, Prolia is a possibility too because the main issue with that is getting off, but you can do it for 10 years. My doctors don't use it at all. I personally would never take it.

Forteo can now be taken more than two years and I assume Tymlos will follow. I am not sure the doses can be compared: it may be a case of apples and oranges since they work a little differently. We need to check that!

Tymlos greatly improved my bones. Spine improved 20% and went from severe to borderline. I have 7 spinal fractures (some from trauma, some from osteoporosis) and didn;t have a choice. I don't know if you have a choice or not.

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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.

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@ripley

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.

Jump to this post

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 🙂

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@windyshores

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 🙂

Jump to this post

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.

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@ripley

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.

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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.

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