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.

imay | @imay | Dec 6, 2023
In reply to @mayblin "Hi @normahorn allow me to bud in here. I have just started learning about bone markers...." + (show)
@mayblin

Hi @normahorn allow me to bud in here. I have just started learning about bone markers. It seems many clinical settings are not using them as a standardized protocol. After watching 2 separate interviews with 2 clinicians (endocrinologists) who practice at MGH, I was surprised to learn that even a setting like MGH doesn't follow them! Maybe too much variation exists especially with regards to CTX? Nonetheless personally I felt it would be very nice to have them at diagnosis, for a future reference, regardless of their accuracy or interpretation.

As far as cholesterol and the hot topic of statin, personally I'm in the camp of using a sensible choice of statin. I'm an example of careless lifestyle choices which handed me with a mild cad ( shame on me!!! 3 generations of both sides of family have no cvd or diabetes, almost no meds living into their 80s and 90s). My numbers were not too far from guidelines low 200s total, 60-70s hdl, 130-150 ldl. The discovery of my cad was accidental from a CT to investigate my cough. I thanked the MD for potentially saving my life, or extending my life. Cardiologists don't call hdl 'good' cholesterol anymore. If my understanding is correct, the new guidelines for ldl is below 100, and ldl is the one that you want to pay attention to. If one has 2nd risk factor, the target for ldl is under 70, which is easy to achieve in my case with a low dose of statin, but hard with just diet and life style. In my case i could only reduce my ldl to around 100 with a strict diet and some exercise. With that said, the door for future evenity may be closed for me, leaving me with one less choice among the limited treatment tools.

Jump to this post

Having either very low or very high HLD carries health risks. Around 70 is good, but there is something like a U shaped curve where certain risks increase at both ends of the spectrum. So it still is good, but only up to a point, so higher is not better. Many doctors used to think that high total cholesterol was OK as long as HDL was high, Not any more.

REPLY
mayblin | @mayblin | Dec 6, 2023
In reply to @ans "Just so you are aware, Fosamax is not the only bisphosphonate on the market. It was..." + (show)
@ans

Just so you are aware, Fosamax is not the only bisphosphonate on the market. It was recommended to me by Dr McCormick , because I’ve had some history of GERD. That he would recommend Actonel, not Fosamax . Look into that . Maybe a possibility .

Jump to this post

Thank you for your kind reply! Although I'm aware of several different bisphosphonates exist, I don't know the rational behind the selection process. My doctor is planning reclast for me. I'm trying to explore which one would be the best candidate to get off of, or, in case a future round(s) of anabolic use are in the cards.

I was thinking out loud in a reply to @windyshores couple days ago, regarding the use of solution form of alendronate for those of us who have mild gerd or stomach issues. If the idea is viable, then other issues like generic equivalency/bioequevalency needs to be figured out. Other bisphosphonates could be potential candidates too. It's just so time consuming and really exhausting to figure these things out.

Dr. Mccormick recommends Actonel to you instead of fosamax, this give me am impression that he favors these to reclast. Do you happen to know his rational of such suggestion?

REPLY
1 reply
windyshores | @windyshores | Dec 6, 2023
In reply to @mayblin "Thank you for your kind reply! Although I'm aware of several different bisphosphonates exist, I don't..." + (show)
@mayblin

Thank you for your kind reply! Although I'm aware of several different bisphosphonates exist, I don't know the rational behind the selection process. My doctor is planning reclast for me. I'm trying to explore which one would be the best candidate to get off of, or, in case a future round(s) of anabolic use are in the cards.

I was thinking out loud in a reply to @windyshores couple days ago, regarding the use of solution form of alendronate for those of us who have mild gerd or stomach issues. If the idea is viable, then other issues like generic equivalency/bioequevalency needs to be figured out. Other bisphosphonates could be potential candidates too. It's just so time consuming and really exhausting to figure these things out.

Dr. Mccormick recommends Actonel to you instead of fosamax, this give me am impression that he favors these to reclast. Do you happen to know his rational of such suggestion?

Jump to this post

McCormick recommends Reclast, but Actonel or Fosamax can be used if a person cannot do Reclast. At least in my discussions with him.

REPLY
1 reply
mayblin | @mayblin | Dec 7, 2023
In reply to @windyshores "McCormick recommends Reclast, but Actonel or Fosamax can be used if a person cannot do Reclast...." + (show)
@windyshores

McCormick recommends Reclast, but Actonel or Fosamax can be used if a person cannot do Reclast. At least in my discussions with him.

Jump to this post

I see. So it seems that reclast is the drug of choice as a lock in agent, unless contraindicated?

Thanks a lot, windyshores!

REPLY
janflute | @janflute | Jan 13 7:11am
In reply to @mayblin "I might have been too eager to give my hip/femor a "load" after seeing the concerning..." + (show)
@mayblin

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?

Jump to this post

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?

REPLY
2 replies
windyshores | @windyshores | Jan 13 4:30pm
In reply to @janflute "I will stop Forteo on July 21,2024. At that time I need to have a Reclast..." + (show)
@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?

Jump to this post

@janflute I have read that Reclast is more potent but if Fosamax is the only one tolerable, it can help. I would ask your doctor because dentists don't seem to know that much about these meds and are afraid of all of them. My dentist was concerned about Tymlos which doesn't even affect teeth!

REPLY
1 reply
windyshores | @windyshores | Jan 13 5:03pm

@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!

REPLY
1 reply
janflute | @janflute | Jan 13 6:40pm
In reply to @windyshores "@janflute I have read that Reclast is more potent but if Fosamax is the only one..." + (show)
@windyshores

@janflute I have read that Reclast is more potent but if Fosamax is the only one tolerable, it can help. I would ask your doctor because dentists don't seem to know that much about these meds and are afraid of all of them. My dentist was concerned about Tymlos which doesn't even affect teeth!

Jump to this post

Thank you. I will talk to Dr. Mannstadt about this when I see him in May. I would want to take the drug that held the bones in place the best. 😘

REPLY
1 reply
gently | @gently | Jan 14 1:09am

janflute, in a head to head clinical trial both drugs prevented spinal fracture in equal measure. Reclast was more effective at preventing overall fracture. Reclast is adherent to the bone for longer so would make a the PTH drugs less effective it you decide on a second go with Forteo or Teriparatide.

REPLY
windyshores | @windyshores | Jan 14 5:31am
In reply to @janflute "Thank you. I will talk to Dr. Mannstadt about this when I see him in May...." + (show)
@janflute

Thank you. I will talk to Dr. Mannstadt about this when I see him in May. I would want to take the drug that held the bones in place the best. 😘

Jump to this post

@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?!

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.