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.

@windyshores

@janflute if you don't have a health condition that concerns your doc about Reclast, they will probably suggest kidney testing, then hydration day before, day of and day after, and a slow infusion. You can also medicate beforehand. Many women I know have absolutely no side effects, but many who do have side effects post here. My test dose is because I have afib, kidney disease and med reactions and my doc wants the test dose for those reasons. Not sure your doc will prescribe a test dose without a reason-? My nephrologist is very concerned for my kidneys with Reclast and communicated that to my endo.

I would think that switching to Evenity might be a good possibility if the Forteo is truly not working or even making things worse. Is it possible the technician made an error?!

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Thank you so much for this information. What a treasure you are for taking the time to share all your valuable knowledge! I think that the Forteo is working well, but I will not know until April when I have a bone density test. I see Dr. Mannstatd in May.

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@janflute

I will stop Forteo on July 21,2024. At that time I need to have a Reclast infusion to hold any bone gains in place. My oral surgeon would prefer me to take Fosomax instead of Reclast, because of complications with the jaw bone should I need invasive dental work in the future. Are there any studies comparing the efficacy of Reclast vs Fosomax in holding bone gains after Forteo?

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@janflute i haven’t come across direct comparison of reclast vs fosamax in a clinical study. The impression i have is that reclast is more powerful. If you could tolerate fosamax and jaw bone is a concern, would fosamax be a better choice in your case, since you could stop using it for a while should oral surgery be needed?

In any case, it is said that effects on jaw bone is minimum if one uses 5 years of fosamax max or 3 annual injections of reclast max. Correct me if this is wrong.

I have a similar time table as yours. Need to decide what to do at end of forteo which is early September.

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@mayblin

@janflute i haven’t come across direct comparison of reclast vs fosamax in a clinical study. The impression i have is that reclast is more powerful. If you could tolerate fosamax and jaw bone is a concern, would fosamax be a better choice in your case, since you could stop using it for a while should oral surgery be needed?

In any case, it is said that effects on jaw bone is minimum if one uses 5 years of fosamax max or 3 annual injections of reclast max. Correct me if this is wrong.

I have a similar time table as yours. Need to decide what to do at end of forteo which is early September.

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Thank you so much!

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@windyshores

@mayblin I don't think lack of exercise explains your situation. I hope you will do Forteo for two years and have a DEXA then. It is still early to do a DEXA. The loss in your hip is a mystery. What does your doctor say?

For those who are nervous about Reclast, you could ask for a test dose of 20% to see how you react. Then have another infusion at a dose of your choice in 3 months. Again, discuss with a doc!

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@windyshores thank you for your thoughts! I've been reading since my puzzling dexa came out. It did seem that exercise might not help too much with bmd, although we have to do them to get stronger and get a better balance. My doctor didn't offer any explanation, guess the significant bmd decrease in hip/femoral neck puzzled her too. From what I read lately, forteo doesn't help bmd much in the femoral area. And due to the porosity increases in the cortical bones, bmd could decrease. In my case it decreased a lot, although this may not indicate decrease in strength. I sure hope so. If the trend persists, I'd have to cook up another plan with my endo.

Keep us updated with your progress with evenity and reclast. Best of luck to you!

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@awfultruth, @mayblin, @gently @windyshores or anyone! LOL
A couple things - I had nutritional chemistry and wanted to chime in on the protein. Get an adequate digestible source of complete proteins - whether you eat meats/fish OR rice/corn/beans - which together makes a complete protein source, does not matter. Why? Your body needs to break it down into amino acids because they build it back up to YOUR body's signature protein. This is the same with cholesterol. People think eating eggs is bad but then they turn to "components" of cholesterol (like oils in foods) and they give their body an EASIER way to make the signature cholesterol.
Protein, carbs or fats -- UNUSED -- will be stored as fat.
Calcium: Calcium levels should be tested BEFORE you adopt any calcium supplements! As stated above, too much calcium in the body can cause devastating effects like calcium lime deposits on your kitchen faucets!
My own blood calcium stays at 9.6 for 40 years. Dr.'s always try to put me on calcium BEFORE they do the test and then they have to take me off. I am lactose free for 6 years and post menopausal for 20 and my calcium does not budge. Your body has a decent way of metabolizing what it needs if you give it a decent diet.
When one ages, one can't metabolize certain things (especially w/o hormones!) so supplements and changes are necessary. But, I always ask for testing to guide my supplement decisions.
Question was asked about good sources of protein: eggs, salmon, tuna, fillet, chicken, pork tenderloin, and yes, even red meat (for HEME iron - I have a problem with iron). Dark green leafy vegetables, don't drink milk with iron containing products, and drink quality nondairy milks if you drink that. Some actually SUCK with 0 protein! For almost the same money you can get 8 or 20 grams of protein. (not to mention calcium and D).
I'd suggest 65 grams of protein per day, with 90 grams if you are counting incomplete sources. More can't hurt.
Now for the real reason I write:
I don't understand the P1NP test score from the literature I just read. It sounds like an INCREASE is bad indicating that the bone is remodeling (breaking down) at an advancing rate as the number goes higher.
But then it contradicts in the same articles that the increase means the bone medicines are WORKING. I'm really lost in this. I just can't interpret the material.
3 months ago, starting the Tymlos and after one reclast infusion the previous year, I was at 49. Three months later I am at 90. I freaked out but then I kept coming across info that maybe its a good thing.
I'll be doing the DEXA with the software analysis (TBD?) next month.
I went to the surgeon and he said "it looks like your spine bones are a little denser in the xrays!" (since my discs are degenerating at an advancing clip, I was happy to hear that! )
Thank you, Lori

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@loriesco

@awfultruth, @mayblin, @gently @windyshores or anyone! LOL
A couple things - I had nutritional chemistry and wanted to chime in on the protein. Get an adequate digestible source of complete proteins - whether you eat meats/fish OR rice/corn/beans - which together makes a complete protein source, does not matter. Why? Your body needs to break it down into amino acids because they build it back up to YOUR body's signature protein. This is the same with cholesterol. People think eating eggs is bad but then they turn to "components" of cholesterol (like oils in foods) and they give their body an EASIER way to make the signature cholesterol.
Protein, carbs or fats -- UNUSED -- will be stored as fat.
Calcium: Calcium levels should be tested BEFORE you adopt any calcium supplements! As stated above, too much calcium in the body can cause devastating effects like calcium lime deposits on your kitchen faucets!
My own blood calcium stays at 9.6 for 40 years. Dr.'s always try to put me on calcium BEFORE they do the test and then they have to take me off. I am lactose free for 6 years and post menopausal for 20 and my calcium does not budge. Your body has a decent way of metabolizing what it needs if you give it a decent diet.
When one ages, one can't metabolize certain things (especially w/o hormones!) so supplements and changes are necessary. But, I always ask for testing to guide my supplement decisions.
Question was asked about good sources of protein: eggs, salmon, tuna, fillet, chicken, pork tenderloin, and yes, even red meat (for HEME iron - I have a problem with iron). Dark green leafy vegetables, don't drink milk with iron containing products, and drink quality nondairy milks if you drink that. Some actually SUCK with 0 protein! For almost the same money you can get 8 or 20 grams of protein. (not to mention calcium and D).
I'd suggest 65 grams of protein per day, with 90 grams if you are counting incomplete sources. More can't hurt.
Now for the real reason I write:
I don't understand the P1NP test score from the literature I just read. It sounds like an INCREASE is bad indicating that the bone is remodeling (breaking down) at an advancing rate as the number goes higher.
But then it contradicts in the same articles that the increase means the bone medicines are WORKING. I'm really lost in this. I just can't interpret the material.
3 months ago, starting the Tymlos and after one reclast infusion the previous year, I was at 49. Three months later I am at 90. I freaked out but then I kept coming across info that maybe its a good thing.
I'll be doing the DEXA with the software analysis (TBD?) next month.
I went to the surgeon and he said "it looks like your spine bones are a little denser in the xrays!" (since my discs are degenerating at an advancing clip, I was happy to hear that! )
Thank you, Lori

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@loriesco not to worry. Your P1NP numbers look good to me. Others will probably comment who have more experience with following the bone markers along with their meds but from my limited experience and studying this, yours are fine. The starting number of 49 is a mid-range number for how much bone building your body is doing without an anabolic med. The 90 reading is a good step up indicating your body is responding to the Tymlos by creating more bone.
OTH if your initial reading was 90 that might be a bit worrisome as an indication that your body without meds is trying to build a lot of bone and probably is also "cleaning up" a lot of bone. I do not know how taking Reclast might have effected your baseline P1NP but generally your numbers indicate bone building was normal range before and now it's kicked into high gear which is what you want.
You did not mention your CTX score which indicating bone breakdown is used along side the P1NP to get a view of the balance between building up and tearing down. If you have your CTX scores that might help clarify things further.

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@awfultruth

@loriesco not to worry. Your P1NP numbers look good to me. Others will probably comment who have more experience with following the bone markers along with their meds but from my limited experience and studying this, yours are fine. The starting number of 49 is a mid-range number for how much bone building your body is doing without an anabolic med. The 90 reading is a good step up indicating your body is responding to the Tymlos by creating more bone.
OTH if your initial reading was 90 that might be a bit worrisome as an indication that your body without meds is trying to build a lot of bone and probably is also "cleaning up" a lot of bone. I do not know how taking Reclast might have effected your baseline P1NP but generally your numbers indicate bone building was normal range before and now it's kicked into high gear which is what you want.
You did not mention your CTX score which indicating bone breakdown is used along side the P1NP to get a view of the balance between building up and tearing down. If you have your CTX scores that might help clarify things further.

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thank you that is wonderful news. The CTX , along with the first P1NP of 49, was 322. Here's another mixed misunderstanding for me. Google says: "Beta-crosslaps test results are normal when less than 300 pg/ml. Above 300 pg/ml indicates increased bone resorption. In this case, the patient may have osteoporosis, Paget's disease, hyperthyroidism, and hyperparathyroidism."
So - do you understand why I am frustrated and anxious? My score is higher than 300, but that is supposed to be GOOD in the first part of the quote. Then, (like the P1NP) it goes on to say that it means negative stuff - osteoporosis and disease. Why can't people write in simple language. It should be qualified with "if you are on bone stimulating medications the response should be taken as an indicator that medicines are positively working in comparison to those who AREN'T taking them, which indicates an underlying concern.
Shouldn't I have had a second CTX at 3 months like the P1NP?!
The Reclast was done Aug. 2024. The Tymlos started mid March but I had such bad reactions I skipped the following month. The P1NP/CTX mid June and now the P1NP. Let me know if I should ask for a CTX to compare? thank you!!!

REPLY
@awfultruth

@loriesco not to worry. Your P1NP numbers look good to me. Others will probably comment who have more experience with following the bone markers along with their meds but from my limited experience and studying this, yours are fine. The starting number of 49 is a mid-range number for how much bone building your body is doing without an anabolic med. The 90 reading is a good step up indicating your body is responding to the Tymlos by creating more bone.
OTH if your initial reading was 90 that might be a bit worrisome as an indication that your body without meds is trying to build a lot of bone and probably is also "cleaning up" a lot of bone. I do not know how taking Reclast might have effected your baseline P1NP but generally your numbers indicate bone building was normal range before and now it's kicked into high gear which is what you want.
You did not mention your CTX score which indicating bone breakdown is used along side the P1NP to get a view of the balance between building up and tearing down. If you have your CTX scores that might help clarify things further.

Jump to this post

REPLY
@loriesco

thank you that is wonderful news. The CTX , along with the first P1NP of 49, was 322. Here's another mixed misunderstanding for me. Google says: "Beta-crosslaps test results are normal when less than 300 pg/ml. Above 300 pg/ml indicates increased bone resorption. In this case, the patient may have osteoporosis, Paget's disease, hyperthyroidism, and hyperparathyroidism."
So - do you understand why I am frustrated and anxious? My score is higher than 300, but that is supposed to be GOOD in the first part of the quote. Then, (like the P1NP) it goes on to say that it means negative stuff - osteoporosis and disease. Why can't people write in simple language. It should be qualified with "if you are on bone stimulating medications the response should be taken as an indicator that medicines are positively working in comparison to those who AREN'T taking them, which indicates an underlying concern.
Shouldn't I have had a second CTX at 3 months like the P1NP?!
The Reclast was done Aug. 2024. The Tymlos started mid March but I had such bad reactions I skipped the following month. The P1NP/CTX mid June and now the P1NP. Let me know if I should ask for a CTX to compare? thank you!!!

Jump to this post

@loriesco you are fortunate to do these tests during the time when Tymlos is active! From what I have read ("Great Bones") a rise in P1NP means Tymlos is working well but check with a doc.

We look forward to hearing your DEXA results! Are you tolerating the Tymlos well now? Fingers crossed for you!

ps I had bone markers at 18 months which were pretty useless 🙂 The P1NP then showed Tymlos wasn't doing much anymore but I stayed on for maintenance while deciding next steps. DEXA at 18 months showed 20% gain in spine and 9% gain in hip.

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For those who are lactose intolerant, as I once considered myself, there is new data about how some people are actually reacting to the A1 casein protein in dairy. The cows in some parts of the world produce milk that has the A2 casein protein (notably Guernsey and Jersey cows) and it is easier to digest and causes much less inflammation and digestive side effects. Below is a link from pubmed (hope it works) with a typical article explaining:
https://pubmed.ncbi.nlm.nih.gov/26404362/. The title of the study is 'Milk Intolerance, Beta-casein and Lactose.'

I first learned of this from a Korean friend whose son went on vacation in Europe. He came home marveling about how he could drink the milk in Europe without problems, and she looked into it (we're physicians who attended medical school together).

Sure enough, when I went to the grocery store and bought A2 milk (the packaging will have that prominently), I was able to drink it without any problems. It opened up another way to get calcium that I thought was closed to me.

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