Mixed results 1 year after Forteo: What are your thoughts?

Posted by mayblin @mayblin, Nov 26, 2023

Hello all,

Recently I've pondering with my dexa results 1 year post Forteo treatment. There are so many involved factors which made it hard to pinpoint whats the main culprit for the negative part of the results.

Background and/Hx: 61yo diagnosed with op summer of 2022, no known fractures. No prior treatment of op including HRT. Started Forteo Sept. 2022. Comorbidities include mild cvd with hyperlipidemia which is controlled with a small dose of crestor; asymptomatic mild GERD w/o treatment and borderline pre-diabetic managed via lifestyle and diet.

At 13 mo post Forteo, Dexa results after vs before treatment are as follows:
L1-L4 spine: avg Tscore -3.1 vs -3.4, with a 4.9% bmd improvement. Each sub level also shows improvements;
Hip: avg Tscore -2.2 vs -1.8, with a -7.6% bmd decreasing!
TBS L1-L4: 1.318 vs 1.264, a 4.3% improvement.
P1NP is elevated in 400+

While I'm very happy with the spine and TBS improvements, the results for the hip/femoral region is very alarming, to say the least.

Has anyone of you experienced or heard of such discrepancy in results that Forteo would produce?

My immediate instinct is that I didn't exercise enough. I was only doing weigh/strength training with free weights consistently, targeting upper, lower and core, 15-20 reps x3-4, twice per week; with some walking and wearing weighted vest/backpack. Never thought about loading hip bones (but, I do quite a bit squats). After some reading I realized maybe I also need to increase amount of quality protein a bit. What's a good protein intake per kg body weight per day, in your opinion?

Anyhow, juggling among drug treatment choices as well as optimal nutrition, supplements and exercise is not an easy task.

Any opinions and suggestions are truly appreciated. The collective experiences and knowledge from patients are powerful!

UPDATE: March 30, 2024

My dexa scan 13 months post forteo therapy was reevaluated later and was found there were technical errors involved. My endo concluded that my femur neck and hip at both sides didn't have any significant change afterall. This is a good news to me. Although I wish I had some positive improvements at femur necks and hips, the results are within expectations. Thanks a lot to those who read my story. mayblin

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Yes, the lab reported normal results by age. But what is "normal" may not be ideal. My LDL was listed as "abnormal" but I would bet it is normal. Not the ideal value but probably falls into what is the reality. Otherwise, the medical professionals would not be trying to get everyone on statins.

I keep seeing references to everyone needing to monitor bone markers but I have seen no one mention what the numbers mean.

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@normahorn

Yes, the lab reported normal results by age. But what is "normal" may not be ideal. My LDL was listed as "abnormal" but I would bet it is normal. Not the ideal value but probably falls into what is the reality. Otherwise, the medical professionals would not be trying to get everyone on statins.

I keep seeing references to everyone needing to monitor bone markers but I have seen no one mention what the numbers mean.

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Hi @normahorn allow me to bud in here. I have just started learning about bone markers. It seems many clinical settings are not using them as a standardized protocol. After watching 2 separate interviews with 2 clinicians (endocrinologists) who practice at MGH, I was surprised to learn that even a setting like MGH doesn't follow them! Maybe too much variation exists especially with regards to CTX? Nonetheless personally I felt it would be very nice to have them at diagnosis, for a future reference, regardless of their accuracy or interpretation.

As far as cholesterol and the hot topic of statin, personally I'm in the camp of using a sensible choice of statin. I'm an example of careless lifestyle choices which handed me with a mild cad ( shame on me!!! 3 generations of both sides of family have no cvd or diabetes, almost no meds living into their 80s and 90s). My numbers were not too far from guidelines low 200s total, 60-70s hdl, 130-150 ldl. The discovery of my cad was accidental from a CT to investigate my cough. I thanked the MD for potentially saving my life, or extending my life. Cardiologists don't call hdl 'good' cholesterol anymore. If my understanding is correct, the new guidelines for ldl is below 100, and ldl is the one that you want to pay attention to. If one has 2nd risk factor, the target for ldl is under 70, which is easy to achieve in my case with a low dose of statin, but hard with just diet and life style. In my case i could only reduce my ldl to around 100 with a strict diet and some exercise. With that said, the door for future evenity may be closed for me, leaving me with one less choice among the limited treatment tools.

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Thank you for the information regarding BTM.

However, you missed my point regarding terminology used. To me "normal" does not refer to guidelines or recommendations but to what is typical of the average person. The average adult woman is 5'4" in height and weighs 170.6 lbs. So the normal for women is to be almost classified as obese with a BMI of 29.3. With lipids, the upper limit for LDL of 100, I would guess, is not what would be found in the average woman.

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@normahorn

Thank you for the information regarding BTM.

However, you missed my point regarding terminology used. To me "normal" does not refer to guidelines or recommendations but to what is typical of the average person. The average adult woman is 5'4" in height and weighs 170.6 lbs. So the normal for women is to be almost classified as obese with a BMI of 29.3. With lipids, the upper limit for LDL of 100, I would guess, is not what would be found in the average woman.

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Thank you for pointing hat out, I know what you meant now! Closer to the average height, I weigh about 115 lbs, a low bmi for sure. Getting personalized medical care for 'smaller' sized patients is vital, i agree.

All of our lab numbers or biomarkers will fall within a spectrum, more or less. If the number(s) become extreme, it'd definitely raise an eyebrow. But sometimes, the little things sneak upon us over the years. My ldl in the past fluctuated depending on what i ate, many times they were normal. Well it sure did its damage. If there is a guideline to adjust normal range according to weight or age, would that be nice! I'm so glad I got this managed right before diagnosis of op. It'd be a lot tougher to figure out management of multiple disease states all at once.

The main reason I wanted to put my voice in this topic of cholesterol, is in regards of evenity's side effects upon cardiovascular system. I haven't read into the mechanism behind this yet, but for those of us whose lipids are borderline like mine, we should be on guards.

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The fracture clinic I went to did not mention lipid levels at all but suggested Evenity for me. I recently pointed out to the NP that the network system she belongs to has flagged me as being malnourised. (4'11 weighing 100 lb) Pushing full dose Evenity might be cause for a malprctice claim if I blindly followed her plan.

I wish there would be more consideration given when terms such as normal or recommended levels are used interchangeably. They are not the same.

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@mayblin

I might have been too eager to give my hip/femor a "load" after seeing the concerning results. Hope I didn't inadvertently damage any parts of my knees, which my strength training coach kept telling us to protect. I'm backing off from the higher impact ones for now. As far as protein goes, I'm uping to 90grams per day from 75. Yes quality and quantity matter yet opinion differs. Hopefully the amount of protein will help me build more muscle mass. I also don't mind having extra adipose tissue as long as they don't all go to my tummy, that might be a tall order.

gently, whats your strategy to get enough calcium?

I don't know much about the anatomy of the bones. Looking at the part where the tech took dexa scan of the femoral bones (the neck), they looks like a trabacular part of the cortical bone, ie, porous part. Am i right? If theoretically the newer made bones by forteo are more porous hence less dense, then would L spine be the same? Mccormick did mention he has seen the wrist bones, which are made of 80-90% dense cortical bones, suffer a decline in bmd after forteo. I'm not too fazed yet since my hips/femur started at ~1.8 which gave me a bit wiggle room. If the speed of the trend continues, then I may regret my decisiom of jumping on the rx bandwagon too early.

If I understand your general strategy correctly, you will be using CTX &P1NP level to exit Forteo? Do the level of these bone markers correlate well to state of bone building vs resorption? Will you do a DEXA at the same time too? Forteo then Forsamax I understand, but whats the rational behind Forteo (i assume followed by a holiday) then Forteo?

Also my impression is that sources of your trust prefer fosamax over reclast. Is this due to their stickiness to the bones? I read fosamax could also stick to bones very long up to 10 years, but I need to read more about this. My doctor is planning reclast for me for 1-2 years after forteo. Now I'm open to reclast, fosamax (I'm searching for a way to get around of the stomach issue since I have mild gerd) . HRT is also on the table since it's a natural way to inhibit osteoclast. But right now i know nothing about hrt. Bisphosphalated bones concern me as well.

The longer term picture (say 10-20years from the start of 1st therapy) is also very uncertain. I felt if we are lucky, maybe we could get bmd to -2 to -2.5 even a bit worse and safely get off the last drug and maintain what we've got just via healthy eating and exercise. If not, a well calculated plan such as anabolic to bis, then maybe back to anabolic... this maybe doable, but for how long? Evenity is an interesting consideration, it seems to be a 'perfect' drug on paper if it mimic real life bone remodeling process. The big question also is, then what?

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My Endocrinologist told me that Fosamax locks in the bone increase. Without it you will loose the Forteo bone density increase.

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@lkel

My Endocrinologist told me that Fosamax locks in the bone increase. Without it you will loose the Forteo bone density increase.

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@lkel could you share the reason why your physician chose fosamax over other bisphosphonates after forteo therapy as a 'lockin' agent? Thank you!

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@mayblin

@lkel could you share the reason why your physician chose fosamax over other bisphosphonates after forteo therapy as a 'lockin' agent? Thank you!

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He only said that if I didn't follow up with Fosamax I would lose the gains I got from Forteo.
I found this about a research study: Recently, some researches showed that sequential administration of parathyroid hormone followed by bisphosphonate was effective in increasing the BMD of osteoporotic patients, in which the followed therapy of bisphosphonate could effectively maintain and elevate the BMD after teriparatide discontinuation [17].

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@lkel

He only said that if I didn't follow up with Fosamax I would lose the gains I got from Forteo.
I found this about a research study: Recently, some researches showed that sequential administration of parathyroid hormone followed by bisphosphonate was effective in increasing the BMD of osteoporotic patients, in which the followed therapy of bisphosphonate could effectively maintain and elevate the BMD after teriparatide discontinuation [17].

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Thank you very much for your reply lkel. Is your doctor monitoring your current fosamax treatment with any bone turnover markers, or just with Dexa annually? If you don’t mind, please share Dexa results following fosamax therapy.

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@lkel

He only said that if I didn't follow up with Fosamax I would lose the gains I got from Forteo.
I found this about a research study: Recently, some researches showed that sequential administration of parathyroid hormone followed by bisphosphonate was effective in increasing the BMD of osteoporotic patients, in which the followed therapy of bisphosphonate could effectively maintain and elevate the BMD after teriparatide discontinuation [17].

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Just so you are aware, Fosamax is not the only bisphosphonate on the market. It was recommended to me by Dr McCormick , because I’ve had some history of GERD. That he would recommend Actonel, not Fosamax . Look into that . Maybe a possibility .

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