1. < Osteoporosis & Bone Health

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.

maggie25 | @maggie25 | Aug 15 12:00pm

Thank you for posting this. I am hopeful that soon I'll be taking Forteo. It is another reminder that I never can let up on doing my bone exercises!

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shani | @shani | Aug 15 1:09pm

I’d appreciate hearing comments/ negative repercussions after stopping Prolea. I’ve taken Prolea for 6 years, Endo says I must take it forever but I’d really like to stop because for last 2 times I have had progressively worse side effects…severe fatigue is impossible. Normally I sleep 6-7 hours, but now sleeping 11-12 hours each night. I’m walking at least a mile a day, sometimes up to 4 so this new fatigue is a real problem for accomplishing much at all. I do not wish to risk the problems with stopping it either but this is now a quality of life issue too.
Thank you .

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2 replies
loriesco | @loriesco | Aug 15 1:33pm
In reply to @mayblin "Thank you very much @loriesco for clarifying. According to ACTIVE study, "early P1NP changes correlate with..." + (show)
@mayblin

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!

Jump to this post

thank you @mayblin . Thank you. Really, thank you! 🙏🏼💐😘

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1 reply
windyshores | @windyshores | Aug 15 1:37pm
In reply to @loriesco "thank you @mayblin . Thank you. Really, thank you! 🙏🏼💐😘" + (show)
@loriesco

thank you @mayblin . Thank you. Really, thank you! 🙏🏼💐😘

Jump to this post

@loriesco please share your DEXA results with us. This sequence is a possibility for many of us!

REPLY
loriesco | @loriesco | Aug 15 1:41pm
In reply to @shani "I’d appreciate hearing comments/ negative repercussions after stopping Prolea. I’ve taken Prolea for 6 years, Endo..." + (show)
@shani

I’d appreciate hearing comments/ negative repercussions after stopping Prolea. I’ve taken Prolea for 6 years, Endo says I must take it forever but I’d really like to stop because for last 2 times I have had progressively worse side effects…severe fatigue is impossible. Normally I sleep 6-7 hours, but now sleeping 11-12 hours each night. I’m walking at least a mile a day, sometimes up to 4 so this new fatigue is a real problem for accomplishing much at all. I do not wish to risk the problems with stopping it either but this is now a quality of life issue too.
Thank you .

Jump to this post

@shani definitely speak with the endo doctor and your primary doctor. We don't know what's causal. I definitely have fatigue (fell fast asleep in the dentist chair this week!) It can be many other things. Ask for them to run blood tests, adrenal tests and hormone tests. (didn't know how old you are). Aging and walking, cardio alone will do it after 6 years!
You can also stop, with your doctors guidance, for a couple months. Take a break and see if you feel any better so you can narrow down if it is the Prolea.
I am sleeping very good since I've been on the Tymlos. I don't sleep longer but I definitely sleep better.
Try some LCarnitine - its a supplement and it totally works for me when I get too fatigued. Also B12 - I take Vitamin Code for women and I also inject B12. I am highly active at 67 and I really get tired. I don't think we know when to slow down....
if I don't do my LCarnitine and keep my B12 inline I am on the couch at noon with a snooze... I hate napping! And I will still sleep all night! so bizarre.

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mayblin | @mayblin | Aug 15 2:11pm
In reply to @shani "I’d appreciate hearing comments/ negative repercussions after stopping Prolea. I’ve taken Prolea for 6 years, Endo..." + (show)
@shani

I’d appreciate hearing comments/ negative repercussions after stopping Prolea. I’ve taken Prolea for 6 years, Endo says I must take it forever but I’d really like to stop because for last 2 times I have had progressively worse side effects…severe fatigue is impossible. Normally I sleep 6-7 hours, but now sleeping 11-12 hours each night. I’m walking at least a mile a day, sometimes up to 4 so this new fatigue is a real problem for accomplishing much at all. I do not wish to risk the problems with stopping it either but this is now a quality of life issue too.
Thank you .

Jump to this post

Hi @shani, there is a good thread started by @formisc discussing stoppage of prolia, lots of info worth reading:
https://connect.mayoclinic.org/discussion/support-for-those-quitting-prolia/
I think its critical to make sure you have an endo working with you at all times, preferably someone experienced with prolia withdrawal. Have a plan and maybe a plan B as well should a problem arises. This thread started by @snoopyluv345 discussed something unexpected happened during prolia withdrawal and what to do about it:
https://connect.mayoclinic.org/discussion/can-i-receive-two-reclast-infusions-in-less-than-a-year/
Best wishes!

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