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Mixed results 1 year after Forteo: What are your thoughts?
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
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she said it interferes with healing. And it causes other problems down the line. I did read about that. But I asked my uber expensive Endodontist and he said there is no ONJ and not to worry. The bisphosphonates can cause issues. But this is why I am staying on the Tymlos. I have had some issues over the years. loving AI for this kind of thing:
Bisphosphonate medications can affect teeth in a few ways:
Osteonecrosis of the jaw (BRONJ): This rare but serious condition can occur when jaw bone dies and becomes exposed through the gums. It can happen after oral surgery, like a tooth extraction, or spontaneously. Symptoms include:
Pain, swelling, or infection in the gums or jaw
Gums that don't heal
Loose teeth
Numbness or a heavy feeling in the jaw
Drainage
Exposed bone
Inhibited tooth movement: Bisphosphonates can inhibit bone resorption, which can affect tooth movement.
Impaired bone healing: Bisphosphonates can also impair bone healing.
So my expensive dentist explained there is a difference between dentin and bone and jaw bone.
The community clinic dentist didn't understand that Tymlos was not a biphosphonate. (they do my cleanings and xrays and saw me on an emergency when I broke my wisdom tooth 3 weeks ago. I did tell you that my trigeminal neuralgia VANISHED after that happened! I must have been walking around with a hairline fracture for a few years. No one caught it! They all agreed it had to have been a gaping fracture for the xrays to read it.
I am lucky to have all three.
Yes my dentist only knows about bisphosphonates and thought Tymlos was the same.
Question that also pertains to me: I gather you are going to have the DEXA on your wrist. Wrist is cortical bone and spine is trabecular. Tymlos works best on trabecular.
I have fractures at three thoracic vertebrae and at L1, L3 and L5, maybe L2. That only leaves L3 for the scan! I would not want my wrist used to be honest but wonder if there is an alternative that still measures trabecular- for you and for me. I am going to ask my doctor before my next scan in April.
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1 ReactionHere ya go, have at it! https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6766518/
it does say the numbers go up with using the Tymlos. I am textbook 100% up at 3 months. I don't know what's up with the CTX... will have to figure that out later...
they know I am having it done on my wrist but my understanding was that "trabecular" was the name of the software analysis. So maybe they used the wrong terminology and meant aBMD? who knows.... I'll find out in a few weeks! https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7539023/
loriesco, in the olden days all that could be controlled were the osteoclasts (reflected by serum CTX). With the approval of anabolic drugs controlling the osteoblasts (reflected by P1NP) provided a better option.
If the medication lowers osteoclasts it will eventually lower osteoblasts. The literature, the protocols and guidelines are anchored in the past and slow to change. It remains true that bisphosphonates when they work lower both building and losing bone. They are intended to stop remodeling and to add density to the bone gradually by the accretion of old bone.
Remodeling, now that's the work of the osteoblasts they move into the areas that where osteoclasts have cleared out bone that has become weak or fissured. The fill in the bone then settle in becoming osteocytes which have the task of realigning in accordance with reverbrations of your activities. so that your bones have resilience with the direction of impact. I don't jump off roofs or out of airplanes anymore; my spicules are realigned for hard running. So I'm less likely to develope bone fissures from this new activity. Thanks to Forteo.
The bone markers are in a toss. Its still a little fringe to use them together, no matter how much sense it makes. How to use them together will be a slow process of discovery littered with multiple opinions.
I'm of the mind that there is a best ratio. It could be reflected in the morning draw, but maybe we miss important information if the osteoclasts are the night workers. I want a fairly close ratio and I want the numbers both on the higher end.
But everything I write should be viewed with suspicion.
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1 Reaction@loriesco maybe you are having the Trabecular Bone Score-? That measures quality rather then quantity, I have been told.
@gently as always interesting ideas. That "ratio" is the "window" Leder refers to. If osteoclasts are night workers and we test at 8am, maybe that confounds accuracy. Apparently there are other factors, including kidney function. I read once that the BSAP, bone specific alkaline phosphatase is a good substitute but I don't know anything about it. With kidney disease I am going to ask my endo.
Thank you @loriesco for your opinions on protein. The topic of quantity and quality of protein gets complicated depending on at which angle we are looking. The recommended quantity is all over the place. I just stick to 90g per day for myself, divided into 3 meals. Like you, I eat 1/4 to 1/3 of my 90grams in the form of plant protein. There are studies showing quality animal proteins are superior in building muscle and maintain muscle strength while plant proteins are definitely more beneficial to cardiovascular system and in reducing all cause mortality.
With regard to calcium supplement, my understanding is that blood calcium level is not a base in determining whether to supplement or not. Our parathyroid hormone regulates blood calcium to maintain an optimal level so our vital organs such as heart and brain can function normally. For example, when blood calcium is too low and we dont eat calcium rich food or supplement calcium, pth is released from the parathyroid gland and it raises calcium in the blood. It works in the bone to release calcium from bone, it also works on intestines to increase absorption of calcium and among other mechanisms. So if one's parathyroid is functioning normally, one should have a normal blood calcium level (could be at the expense of our bone density if we don't take in enough calcium daily). The general concensus is to get ~1000-1200mg calcium daily from a combination of food sources and/or a calcium supplement for a post menopausal women.
Hi @loriesco could you clarify some timelines when you get a chance please?
Reclast infusion was in August 2023?
Your p1np 49 and ctx 322 was your 'baseline' right before the start of tymlos in mid March 2024?
Your p1np 90 was in mid June 2024, 3 month after the start of tymlos? Did you get CTX tested at 3 mo after tymlos?
Thank a lot!
@loriesco From your response to me on the bone markers it seems we have misunderstood each other. I'll say what I think might reduce the confusions and then bow out.
1. If your ctx goes up with Reclast or stays the same after an infusion that is generally not good. You are trying to suppress osteoclast activity. Eventually the osteoclast activity will come back up and that is normal. One year between an infusion is an average time that may not be best for everyone but seems to work for most. It may result in more Reclast infusions and side effects than necessary.
2. I was in no way advocating you take Reclast at the same time as Evenity.
I was using Reclast and it's effects on bone markers as examples of a way of thinking.
3. I was not suggesting your doctors were bad or lacking in knowledge. I do not know them. I was just stating that some doctors I have met and many described on these pages are lacking knowledge and critical thinking in these areas. So it behooves us to be diligent. Sounds like you are already doing that.
4. As you say you are confident in your doctors that is great. One less big thing to worry about.
CTX and P1NP are excreted through the kidneys elevating the concentration in the blood when kidney function is lower. I read that BSAP is not affected by CKD https://pubmed.ncbi.nlm.nih.gov/28429547/
Yes, the anabolic window, but the window with the cleanest glass, the one that lets the most bone. How many osteoblasts does it take to keep up with one osteoclast. The endocrinologist I see the most often says that it doesn't work that way. The bone pathologist that I only talk to by phone and hardly ever says that is how it works. I never argue.