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.

@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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Thank you. Very informitive.

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@mayblin

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.

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very interesting. My endo has approved a third year for me to take Forteo injections, which began in July. I am a bit worried about any bone cancer risks, but I have to think that if he thought it was dangerous he would not have approved it.

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@janflute

very interesting. My endo has approved a third year for me to take Forteo injections, which began in July. I am a bit worried about any bone cancer risks, but I have to think that if he thought it was dangerous he would not have approved it.

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@janflute I read that not a single human has gotten bone cancer from Forteo. The only concern, I think, is for those who have risk for metastatic cancer that can spread to bones. I have had high grade breast cancer and did Tymlos for two years and would gladly do more! Your doctor knows more about this and if you are uncomfortable with the prospect, maybe you can discuss it with them.

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@windyshores

@janflute I read that not a single human has gotten bone cancer from Forteo. The only concern, I think, is for those who have risk for metastatic cancer that can spread to bones. I have had high grade breast cancer and did Tymlos for two years and would gladly do more! Your doctor knows more about this and if you are uncomfortable with the prospect, maybe you can discuss it with them.

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Thank you so much for your reassuring words. Dr Mannstadt is a wonderful doctor, but I only see him once a year, and really have no communication with him because he is so very busy.

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@janflute

very interesting. My endo has approved a third year for me to take Forteo injections, which began in July. I am a bit worried about any bone cancer risks, but I have to think that if he thought it was dangerous he would not have approved it.

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There is new research that doesn’t limit the medication now to two years. You can ask your doctor if that is why he’s extending your treatment. Don’t be intimidated to ask questions!

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@janflute

Thank you so much for your reassuring words. Dr Mannstadt is a wonderful doctor, but I only see him once a year, and really have no communication with him because he is so very busy.

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Just about all doctors have a portal now for patient inquiries. They also have receptionist staff and nursing staff to help support especially for these medication‘s so call up and get a message to your doctor and make your questions concise, but please don’t be intimidated because somebody is ” busy“it’s your life that’s on the line. That’s the most important thing.

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@awfultruth

@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.

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I was t taking offense. There are a lot of people here who do have bad doctors; there are also people here who have good doctors, but they are bad patients L O L! my endocrinology doctor has been a hard nut to crack as they say; so I had to push more than a little bit to get the information I deserved. It’s probably part and parcel of the medical system and the shortage of staff since the affordable healthcare act and Covid, I don’t blame anyone personally. It’s just a hard time to need medical services. Thank you for your input.

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@mayblin

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!

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The Reclast infusion was August 2023. I started the Timos March 17, 2024. I did one month and stopped. I started the medicine again May 1, 2024. I took The P1 NP and the CTX at the beginning of June. And I just took the latest PNP last week, but it was strange that the CTX was not ordered. Do you think that it’s weird that the CTX was not ordered in companion to the P1 NP? or do you think the CTX was a marker for the reclast I took last year? (And maybe the thought is because I’m not having any more RECLAST before I finish The TYMLOS) maybe it’s not necessary? I did ask my regular primary care manager to order the CTX because I thought it was a companion to the P1 NP my surgeon last week said he thought my spinal vertebrae looked denser than six months ago, so that’s probably the best thing I could want to hear anyway. Your thoughts?

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@loriesco

The Reclast infusion was August 2023. I started the Timos March 17, 2024. I did one month and stopped. I started the medicine again May 1, 2024. I took The P1 NP and the CTX at the beginning of June. And I just took the latest PNP last week, but it was strange that the CTX was not ordered. Do you think that it’s weird that the CTX was not ordered in companion to the P1 NP? or do you think the CTX was a marker for the reclast I took last year? (And maybe the thought is because I’m not having any more RECLAST before I finish The TYMLOS) maybe it’s not necessary? I did ask my regular primary care manager to order the CTX because I thought it was a companion to the P1 NP my surgeon last week said he thought my spinal vertebrae looked denser than six months ago, so that’s probably the best thing I could want to hear anyway. Your thoughts?

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Thank you very much @loriesco for clarifying.

According to ACTIVE study, "early P1NP changes correlate with percentage change in lumbar spine BMD 18 months after abaloparatide (Tymlos) treatment". So your P1NP increase from baseline* (after 1 shot of reclast and some partial dosing of tymlos) of 49 to 90 at roughly 2 months of tymlos (5/1-7/1) is wonderful, considering you actually had reclast 7 months prior to Tymlos. Theoretically a strong antiresorptive like Reclast would have a strong and long lasting effect which suppresses osteoclasts (CTX reflects their activities) and consequently osteoblasts (P1NP reflects their activities). The fact that your P1NP responded strongly within 3 months Tymlos suggests Reclast may not 'blunt' too much of Tymlos' anabolic effect in your case. Your next Dexa will help confirming this.

Bone markers change dynamically after the start of an anabolic. With a prior treatment of reclast, your CTX changes likely won't follow the typical average changes shown in a trial data. It definitely is interesting to observe both p1np and ctx together especially with your sequence of therapy. However, since ctx is missed at 2mo, you might want to test both markers next time if neither lab ordering nor insurance payment presents a problem. Otherwise your p1np @2mo and the coming dexa would give you enough information.

Best of luck and please keep us posted!

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@loriesco

Just about all doctors have a portal now for patient inquiries. They also have receptionist staff and nursing staff to help support especially for these medication‘s so call up and get a message to your doctor and make your questions concise, but please don’t be intimidated because somebody is ” busy“it’s your life that’s on the line. That’s the most important thing.

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Thank you!

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