Loss of BMD in hips after taking Forteo or teriparatide?

Posted by lynn59 @lynn59, Mar 29 9:14pm

I’m scheduled to start a biosimilar to Forteo in a couple of weeks and I just read a post today from a woman who lost bone density in her hips after being on Forteo. I got interrupted and couldn’t find the post again, so I’m asking the question here as now I’m afraid to start. My T-score in my spine is -3.1 and my hips are -2.8. I’m borderline whether I need an anabolic and the only reason I’m doing it is because I downhill ski, as well as cross-country and backcountry skiing. I can’t afford to lose in my hips. My endocrinologist warned I may lose in my forearm, but she didn’t say anything about losing in my hips. Now I’m wondering if I should not start it and just go on a Actonel, Reclast or Prolia …. Or do nothing! This is all scaring me silly.

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@sallyj2

What do they base improved bone quality on? If DEXA drops for some people and they use DEXA to tell us we need treatment, how can they then say the quality is better unless maybe TBS improves? Or, is it based on human bone biopsies?

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@sallyj2 my doctors' comments on bone quality effects were no doubt based on studies, but I didn't ask. I have not had any tests on bone quality, including TBS- even McCormick says mine will be terrible so I don't need to do them!

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@sallyj2

Why do you consider Forteo to be safer than Tymlos and what do you like after Forteo? Are we all destined to eventually have risks from busphisphrnates? Hrt supposedly may also holds after Forteo or Tymlos.

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@sallyj2 both Tymlos and Forteo are good drugs. I could not tolerate Forteo at all. Others can't tolerate Tymlos. I think tolerability is an important factor 🙂

Tymlos is "safe." I am not sure if @gently was referring to cortical porosity effects. My doctors and McCormick seem to think cortical porosity is a negative and Tymlos is slightly better on that count. But @gently posed an interesting question on flexibility vs density.

Here is an older discussion of the two options
https://connect.mayoclinic.org/discussion/forteo-vs-tymlos-1/

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sallyj2,
I'll write what I really think with liberty because it's April Fool's Day.
Forteo might be safer than Tymlos because the dose is so much lower (4x). Forteo at 20mcg is (I would say "Likely", but am forbidden that word on this forum, so) perhaps, too high a dose for many of us (lightweights).
Osteoclasts clean the bone before osteoblasts lay down new bone. These cells are said to work most efficiently when coupled. The nature of Tymlos' attachment to the bone allows for an earlier uncoupling of the clasic/blastic team.
While neither of these drugs poses great risk, there is the risk of complication because of co-diseases. And there is a risk of allergic reaction.
Tymlos contains preservative, which is why it doesn't need refrigeration, that increases the possiblility of allergic reaction. Since you can quickly stop taking either of these drugs, they are safter than drugs that persist in your body for months. But there are many brave souls who work at tolerating these side effects.
Finally, it is in my mind, that a slower development of new bone provides an opportunity for the bone to become seated--settle more deeply into the bone matrix where osteoblasts mature into osteocytes. Osteocytes are said to be the cells that remodel our bones making them more flexible specifically in response to our activities.
Bisphosphonates are safe for most. And they have prevented many more fractures than they have caused. I'd sure take them if there weren't the anabolics. I'd prefer to keep bone gains recycling than hold those gains. I think there is a perfect balance of osteoclast/osteoblast acheivable through more intermittant dosing of Forteo. After Forteo I plan on more forteo.
Don't be fooled by my thinking. I may recognize the shortfall on my next dxa, or the one after, or by one of those painful fractures.

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@windyshores

@sallyj2 both Tymlos and Forteo are good drugs. I could not tolerate Forteo at all. Others can't tolerate Tymlos. I think tolerability is an important factor 🙂

Tymlos is "safe." I am not sure if @gently was referring to cortical porosity effects. My doctors and McCormick seem to think cortical porosity is a negative and Tymlos is slightly better on that count. But @gently posed an interesting question on flexibility vs density.

Here is an older discussion of the two options
https://connect.mayoclinic.org/discussion/forteo-vs-tymlos-1/

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windyshores, I greatly admire your will power in tolerating adverse effects with pharmaceuticals. And admire even more your cleverness, inventiveness with titration of these medications. I especially appreciate your responses, knowing how much they've helped others in our circumstance.
You aren't the senior contributor, but you are the most experienced. And the most balanced.

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@windyshores

@sallyj2 my doctors' comments on bone quality effects were no doubt based on studies, but I didn't ask. I have not had any tests on bone quality, including TBS- even McCormick says mine will be terrible so I don't need to do them!

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I don’t know how accurate REMs is, but according to my scan two months ago, my osteoporotic bones are still in the green zone (good) with respect to quality, albeit at the cusp of the orange zone. At least I was no where near the red! My first TBS score on April 9 will be interesting!

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@gently

sallyj2,
I'll write what I really think with liberty because it's April Fool's Day.
Forteo might be safer than Tymlos because the dose is so much lower (4x). Forteo at 20mcg is (I would say "Likely", but am forbidden that word on this forum, so) perhaps, too high a dose for many of us (lightweights).
Osteoclasts clean the bone before osteoblasts lay down new bone. These cells are said to work most efficiently when coupled. The nature of Tymlos' attachment to the bone allows for an earlier uncoupling of the clasic/blastic team.
While neither of these drugs poses great risk, there is the risk of complication because of co-diseases. And there is a risk of allergic reaction.
Tymlos contains preservative, which is why it doesn't need refrigeration, that increases the possiblility of allergic reaction. Since you can quickly stop taking either of these drugs, they are safter than drugs that persist in your body for months. But there are many brave souls who work at tolerating these side effects.
Finally, it is in my mind, that a slower development of new bone provides an opportunity for the bone to become seated--settle more deeply into the bone matrix where osteoblasts mature into osteocytes. Osteocytes are said to be the cells that remodel our bones making them more flexible specifically in response to our activities.
Bisphosphonates are safe for most. And they have prevented many more fractures than they have caused. I'd sure take them if there weren't the anabolics. I'd prefer to keep bone gains recycling than hold those gains. I think there is a perfect balance of osteoclast/osteoblast acheivable through more intermittant dosing of Forteo. After Forteo I plan on more forteo.
Don't be fooled by my thinking. I may recognize the shortfall on my next dxa, or the one after, or by one of those painful fractures.

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@gently. My endocrinologist said the Forteo dose is not too high for me (I’m 5’2” and weigh 120 lbs). She said they give it to children. I’m about to start, so it will be interesting to see how my body reacts.

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@gently

windyshores, I greatly admire your will power in tolerating adverse effects with pharmaceuticals. And admire even more your cleverness, inventiveness with titration of these medications. I especially appreciate your responses, knowing how much they've helped others in our circumstance.
You aren't the senior contributor, but you are the most experienced. And the most balanced.

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You are a great contributor as well. I’ve learned so much from several intelligent people who are posting on this forum❤️

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@gently

windyshores, I greatly admire your will power in tolerating adverse effects with pharmaceuticals. And admire even more your cleverness, inventiveness with titration of these medications. I especially appreciate your responses, knowing how much they've helped others in our circumstance.
You aren't the senior contributor, but you are the most experienced. And the most balanced.

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@gently you are providing hard to find facts that demonstrate the nuances in all these options, and your posts are appreciated as well!

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@awfultruth

@lynn59 "8 months research", so I was unknowingly preaching to the choir on doing research!

As to your doc and her DXA comments I have no idea what she meant about accuracy and frequency. As accurate as what? I could make guesses but not much point in that. I have seen nothing emerging in the literature or talked about in forums to indicate DXA s are no longer thought to be valuable. I do acknowledge that DXA scans are not as accurate as we want them to be. That is unfortunate and frustrating but not using them because they are imperfect is illogical, at least until you have a better replacement to offer.

Many times large scale public policy recommendations are based on measures that do not reflect their worth to an individual. In other words factors like the money the insurance companies or governments would have to spend short term may be a huge factor in the recommendations. Personally I'm getting scans every year (and once even sooner) until I get my bone loss under control. I can make use of that information even though it may be imperfect. And finally a large percentage of all the research on drugs, exercise and other factors influencing bone loss (or gain) is done using DXA scans. And those DXA scans in research are often done at shorter intervals than 2 years. Certainly down to 6-8 months. Those scans done at those more frequent intervals are how we know a lot about how well drugs perform or whether or not this style or that style of exercise is more beneficial to our bones.

Personally I would have anxiety from her recommendations because they don't match what I consider best practice or what's most logical. Following a course of treatment with daily injections for 2 years with no attempt to determine if it's helping, that to me is sheer lunacy.

I acknowledge that some doctors who are considered osteoporosis experts practice that way. Just doesn't make sense to me.
Best of luck with your decisions

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I’m agree with everything you said. Perfect or not, the more information I have to steer me in the right direction, the better! I’m very disappointed in my “expert” endocrinologist. I think following me doesn’t fit in with her research goals.

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@windyshores

I just wanted to boost my femur neck and also "treat to target," meaning get all the scores as close to osteopenia as possible. I attended a masterclass offered by Lani Simpson, back in 2021, where a woman described her gains on Tymlos and her gains on Evenity after Tymlos. I didn't even realize that was not a protocol prescribed by my endos until I requested it. For now, in both practices I go to, I am the only patient doing this. My idea was to do just 3-4 months for a boost, then Reclast. I have since seen studies investigating that kind of use of Evenity, and hope it becomes mainstream in the future. For now, I am my own guinea pig- and my doctors'!

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Wow you are a pioneer for all of us! Good luck. I’m anxious to find out the outcome. Good for you for truly being the CEO of your own body❤️

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