Scared by latest DEXA showing severe osteoporosis. Need advice.

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?

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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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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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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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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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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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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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