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

@gently Thank you so much for your insights! Quatitative CT sounds interesting, is it used clinically? Your read about Forteo's effects on cortical bones may explain my results, I surely hope so, and wish femoral/hip bmd turns back up at the end of the treatment.

My knowledge of P1NP & CTX are fairly new. My endo didn't check either prior to forteo, she checked P1NP only at 1 year. If they are important, would these be standard tests for everyone at diagnosis, as well as markers for therapeutic progress? That puzzles me. There is an article by Kim et al about forteo, where the authors illustrated the anabolic window of forteo, as well as these 2 bone turnover markers vs time (in month). It appears that the anabolic window is about 24 months, that's when P1NP and CTX reach at an equivalent level. That's interesting. I might ask to get both markers tested when I see her at 18 month. Out of curiosity, why might you consider the 3rd year of forteo? Would the third year help to achieve more bone building even with CTX rising? Or, would sequential bisphosphanate treatment after forteo hinder any future anabolic effectiveness?

The article you attached is a good read. 0.8g/kg/day seems low though, but that's from nutritional experts. I had the impression that elders generally are advised to increase protein intake. The consesus of optimal amount for op patients is hard to figure out.

The high impact exercise to stimulate femoral/hip area can be challenging to some of us. My knees are complaining just after 10 days of hopping n jumping lol....

Hi @vkmov fyi I asked site staff, who kindly corrected the sentence preceding the Dexa results in original post this afternoon. Hope I don’t confuse you further!

Essentially my avg hip/femoral Tscore worsened from 1.8 (pre treatment) to 2.2 (after treatment), bmd decreased 7.6% 🙁, while Lspine and TBS improved nicely.

If you have any insights to this perplex overall results, please share. Thank you!

Gently, I have been reading and listening to very different perspectives on protein in relation to bone loss and fracture risk than what you are describing. What I have gathered is that:
1. Higher protein intake than the suggested RDA of .8 grams per kilogram of bodyweight is not detrimental to bone density and probably improves it.
2. Higher protein intake is essential for preventing sarcopenia which is a key factor in fracturing due to muscle loss contributing to balance problems and falls and being unable to catch yourself if you do fall.
3. 25 grams of protein in a meal is nowhere near the max that adults can utilize. Donald Layman a noted protein researcher says that somewhere around 30 grams is needed at a meal for skeletal muscle protein synthesis to occur.
4. "Extra protein" is not stored as fat.
5. The paper you link to does not support what you are saying. In fact the thrust of the paper is that it appears more protein is needed especially in older adults for better bone health. The highlighted quote that I see via your link is confusing due to the way it is written. On careful rereading I see the quote means the opposite of what it might appear to mean. Both pieces of the quote do in fact indicate improved bone density with protein levels higher than the usual .8 gm.
6. In the conclusion to the paper you link there is a single sentence that clarifies what the author is saying: "contrary to the longstanding hypothesis, fairly compelling evidence to date suggests that higher intakes of dietary protein do not have any detrimental effect on bone and likely pose a beneficial effect.".

Most of what I've said above is my take on interviews with Donald Layman who seems to be a real expert in the area. It's easy to just search on him and find his website and youtube interviews and so on. Dr. Gabrielle Lyon is an MD who has studied with Layman and emphasizes protein in her practice and her talks are also readily available on the internet.
Hope this is of use.

I believe if you catch an error quickly enough, you can correct it yourself. Try clicking on the 3 dots at the bottom right of your post. I will try it once I hit "post".

Yep, editing is allowed. I have no idea for how long.

An edit after 12 minutes.

Looks like we may be able to edit possubly until the next post in the thread.

Jumping and hopping can slightly displace my kneecap. But it never makes me laugh. You must be very good natured. I can run and skip without trouble.
We share the impression about elders, but it may be more about how much absorption your body can effect. One vexing question is how do you know.
If you look at the mcchanisms of action with bisphosphonates objectively, you'd conclude that a bisphosphonate would "blunt" the effect of Forteo. I have it from a bone expert that alendronate is the bis to use intermittantly because is has the least persistance in the bone. zolendronate (Reclast) is the most persistent in the bone.

While scavenging for ideas, it occurred to me that we need brief periods of osteoclasts. Osteoblasts work most effectively when coupling with osteoclasts. My plan with the bone markers is to follow them until the anabolic window closes and then pause the Forteo. If the CTX or when CTX rises sufficiently or P1NP drops significantly, I'll take either alendronate or Forteo. I'll try to avoid the bisphosphonates because of the type of bone they form.

The very nice curve illustrated by Kim et all might be accurate.
I have it from an endocrinologist that in his long practice the anabolic window in most women drops after three months on Forteo according to the bone markers. While that didn't happen to me or my markers, we may be all quite different from the graph. This being the value of the bone markers.
Neither the bone markers, nor qualitative CT are standard of care or widely used. "Economic feasibility" has a role in adoption of these standards. Both types of measurement are costly and insurers don't like to pay for them.
But to your question about CTX. It isn't as stable as P1NP. Some people say unreliable but it does reflect what is happening with the bone, it is just more variable. Time of day, whether you've eaten or not, whether you've exercised or had a recent fracture affect the CTX results.
I want them both because I'm using them in relation to each other in this way. My CTX reading has increased by 1/3rd, but my P1NP has doubled. I''ll continue with Forteo until CTX reads as a higher percentage increase than P1NP. But this may be an incorrect mcethod.
Your P1NP reading is great and I would say that you wouldn't have been advantaged by having it before treatment. And even that you wouldn't have been advantaged by having a CTX. Clearly Forteo is effective for you. If your P1NP were equivocal, then I'd wish you'd had both bone markers before and after. I get the markers every three months.
It is important and also more interesting to know your source and question the information.
You noticed that the article recommended more protein than the CDC recommends. The author works for the beef and egg industry.
I try take 100 grams of protein a day. Just guessing.

Hi @mayblin, I've been taking alendronate for a couple of years. My spine went out of osteoporosis to osteopenia, but my hips got a little worse. My PCP was perplexed, but I was on high dosages of prednisone for a year and a half for an autoimmune disorder.
I've increased calcium and animal protein, as I was eating a lot of plant based proteins before. I drink way more milk and make yogurt every week. I do keep intake of saturated fats low.
My doctor suggested I get a mini trampoline, rebounder, to build my hips. I did. It was challenging at first, as my knees ached. I found videos for people of all abilities Rebounding at Earth & Owl and found my technique was poor. I changed it and was able to continue rebounding.
My doctor recommended rebounding 10 minutes a day. She also said it would strengthen my pelvic floor muscles. In a couple of months, it really has. I notice a real difference. I feel lifted, not sagging, down there.
I've also looked up exercises to help with bone density in the hips. Bridges and clamshells are good. Dr. Alyssa Kuhn has an exercise that can be done from a chair, stomping, that also may help and be gentle on the knees. Someone posted it yesterday.
Dr. Loren Fishman has 12 Poses vs Osteoporosis, on YouTube. Participants in his study did increase bone density. His study of selected yoga poses improving bone density is ongoing.
I hope that helps, Teri

Teri, thank you very much for sharing your experiences with fosamax and exercising suggestions. From what I read, it seems most op meds help lumber vertebrae more than cortical femur bones, maybe with the exception of ProLia.

It is unfortunate that we couldn't single out one exercise to evaluate its effectiveness. Lots of opinions suggest that impact exercise such as jumping and stomping give cortical bones a load to keep it healthy. I for now have to give those high impact exercise a rest to keep my knees happy. If appropriate, please share if you get improved dexa results after your starting mini trampoline.

Your results are very encouraging for sure! How long will you and your doctor plan to be on fosamax?

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?

What are considered good PINP and CTX values? Mine were 50 and 210 respectively.