Forteo: What is your Experience?

Posted by leeosteo @leeosteo, May 18, 2023

I'm looking for anyone's experience with Forteo. What were your side effects? Were they tolerable? Did you see good gain in bone density? What med did you follow up with to lock in gains?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@ymv

I’m on Tymlos not Forteo but I also have gained weight particularly belly fat

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Me too. Ending of 2nd or 3rd month. (big ole watermelon) I stopped injecting in my stomach. It hasn't abated. I've always watched my waistline. Yes, I'm getting older but... it seemed to come on rather suddenly.

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@gently

Both of the truely fine endocrinologists consulting with me recommend Reclast after Forteo.

With the removal of the black box warning on Forteo the future for those of us long lived with osteoporosis has changed. Not only can you repeat Forteo after using an interlude drug, but the response to a second two years on Forteo is as robust as the first.

Aftermarket clinical studies have proven that the 18 month limit on Forteo and Tymlos is unnecessary. Neither drug causes or is associated with an increase in bone cancer.
https://www.ccjm.org/content/88/9/489

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The article only covered teriparatide. I didn't see Tymlos - abaloparatide mentioned anywhere. Did I miss it? It's still recommended for 2 years max:. I can't post a link yet... but google "Tymlos maximum dosage"

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@bee1950

Hi,
I’ve been on Forteo for 15 months without any side effects. My recent bone density test noted good improvement in my spine (3.6 lowered to 2.9) but my hip readings remained essentially the same. I receive the medication for free through LillyCares based on my income. You have to apply annually. I haven’t decided whether I will use another medication after I finish Forteo. Good luck with your decision!

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My surgeon said the DEXA scans can't be entirely trusted. I was termed out of osteopenia to normal and when they did my cervical spine surgery last summer my C5 was paper thin and fell apart in their hands. Ask your doctor. Seems like your spine test should be pretty good. Also know that the same equipment to test on is uber important.

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@loriesco

The article only covered teriparatide. I didn't see Tymlos - abaloparatide mentioned anywhere. Did I miss it? It's still recommended for 2 years max:. I can't post a link yet... but google "Tymlos maximum dosage"

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@loriesco
You didn't miss anything. Sorry.
https://www.drugdiscoverytrends.com/fda-approves-removal-of-boxed-warning-from-label-for-osteoporosis-drug-tymlos/
Maximum dosage has changed. Protocal will be slower, as always. The internet has all kinds of outdated material. You'd expect the drug inserts would be updated. The university websites are particularly egregious and they often don't even cite study sources
Too many osteoporosis providers are unaware of the changes and too many don't know how to use bone markers, which I think will be crucial to the understanding of long term Forteo and Tymlos use in individual patients.
The issue is (no longer bone cancer) the anabolic window. At some point on PTH meds the osteoclasts catch up to the osteoblasts because more osteoblastic activitiy stimulates the osteoclasts. Short breaks from Tymlos or Forteo may be the solution.

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@gently

@loriesco
You didn't miss anything. Sorry.
https://www.drugdiscoverytrends.com/fda-approves-removal-of-boxed-warning-from-label-for-osteoporosis-drug-tymlos/
Maximum dosage has changed. Protocal will be slower, as always. The internet has all kinds of outdated material. You'd expect the drug inserts would be updated. The university websites are particularly egregious and they often don't even cite study sources
Too many osteoporosis providers are unaware of the changes and too many don't know how to use bone markers, which I think will be crucial to the understanding of long term Forteo and Tymlos use in individual patients.
The issue is (no longer bone cancer) the anabolic window. At some point on PTH meds the osteoclasts catch up to the osteoblasts because more osteoblastic activitiy stimulates the osteoclasts. Short breaks from Tymlos or Forteo may be the solution.

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@gently THANK YOU. Also, I was really curious about the "short breaks." I hate to tell you how "not-up-to-date" my endocrinologists are but they are lousy at providing support. I have an intuition that I might want - or need - to take breaks. I do some physical work and I am concerned that I won't have the stamina/energy to do the work I need to accomplish. So I was thinking about a break. I took one in March - no, let me rephrase - I waited until after my 5K walk 3/10/24 to get started. I felt loopy so it was good that I waited. I did 3/20 - 4/20. Then I waited again until I could speak to the nurse. It seems like they just read the info off the insert! I've been slowly reading comments here and it seems like others slowly ramp up (I am at 6 clicks now) and I was considering breaks if I can't get focused. All of a sudden, I am getting more clear headed. I switched to evening injections. I did a reclast injection July 2023. Had a HORRID reaction. So I was put on this. I was told to do this for 2 years then go back to the reclast (I think it was 3 annual injections) and I would be done for life.
They didn't do any blood tests to start me on the Tymlos. I ASKED for some when I saw calcium, D, , etc should be tested. I always got DEXAs but when my bones fell apart in surgery my surgeon said don't bother my wrist doesn't tell anything - to vague. (my bigger joints were replaced). My wrists were normal. Is there some bone markers you can point me to to educate myself? Any info on the "short breaks?" (I did bring this up as an idea if I couldn't get rid of the side effects and they poo-pooed it. I'm also wondering - since I am a petite person if I might want to stay at 6 clicks. I mean, would a 280 pound male do 8 clicks and a 5'2" 140 petite woman do the same? Thank you!

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@loriesco

@gently THANK YOU. Also, I was really curious about the "short breaks." I hate to tell you how "not-up-to-date" my endocrinologists are but they are lousy at providing support. I have an intuition that I might want - or need - to take breaks. I do some physical work and I am concerned that I won't have the stamina/energy to do the work I need to accomplish. So I was thinking about a break. I took one in March - no, let me rephrase - I waited until after my 5K walk 3/10/24 to get started. I felt loopy so it was good that I waited. I did 3/20 - 4/20. Then I waited again until I could speak to the nurse. It seems like they just read the info off the insert! I've been slowly reading comments here and it seems like others slowly ramp up (I am at 6 clicks now) and I was considering breaks if I can't get focused. All of a sudden, I am getting more clear headed. I switched to evening injections. I did a reclast injection July 2023. Had a HORRID reaction. So I was put on this. I was told to do this for 2 years then go back to the reclast (I think it was 3 annual injections) and I would be done for life.
They didn't do any blood tests to start me on the Tymlos. I ASKED for some when I saw calcium, D, , etc should be tested. I always got DEXAs but when my bones fell apart in surgery my surgeon said don't bother my wrist doesn't tell anything - to vague. (my bigger joints were replaced). My wrists were normal. Is there some bone markers you can point me to to educate myself? Any info on the "short breaks?" (I did bring this up as an idea if I couldn't get rid of the side effects and they poo-pooed it. I'm also wondering - since I am a petite person if I might want to stay at 6 clicks. I mean, would a 280 pound male do 8 clicks and a 5'2" 140 petite woman do the same? Thank you!

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@loriesco
Bone markers CTX and P1NP are best used to determine if a medication is effective. CTX measures the activity of osteoclasts; P1NP measures the activity of osteoblasts. I'd be curious to see those markers now because Reclast which is active for a year or two, clads the bone preventing the attachment of both types of cells to a gradually lessening extent for ten years.
Interesting you were told you would be "done for life."
Where are you receiving treatment.
Would you say that you are getting more focused because you've adjusted to 6 clicks.
Was the horrid reclast reaction longer than a week. It would be usual for you to have benefit from reclast despite the adverse response.
I agree with you about titrating for size. I harbor the suspicion that even one click would hold some advantage. I hope Windyshore's weighs in with expertise and a firmer concept about dosing.

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@gently

@loriesco
Bone markers CTX and P1NP are best used to determine if a medication is effective. CTX measures the activity of osteoclasts; P1NP measures the activity of osteoblasts. I'd be curious to see those markers now because Reclast which is active for a year or two, clads the bone preventing the attachment of both types of cells to a gradually lessening extent for ten years.
Interesting you were told you would be "done for life."
Where are you receiving treatment.
Would you say that you are getting more focused because you've adjusted to 6 clicks.
Was the horrid reclast reaction longer than a week. It would be usual for you to have benefit from reclast despite the adverse response.
I agree with you about titrating for size. I harbor the suspicion that even one click would hold some advantage. I hope Windyshore's weighs in with expertise and a firmer concept about dosing.

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Thanks @gently! I am receiving treatment at UCSD. I'll inquire more but I think it had something to do with Tymlos doing its work over the next 2 years. Then 3 more years of reclast that gets me to 72 and then 10 years effective by your numbers and maybe I am too old to be treated?!
About the clicks - I was really dizzy, floaty, and not tethered to the ground if you know what I mean. I had nausea and headachey and tired. This was on the 8 clicks which I did for a month in the morning. Only through my reading (even though I inquired of the physicians assistant - she said discouraged any reduction in clicks) but when I saw her after I stopped one month - only then did she say to start on 2, 4, 6, to 8 moving up every week. But then I read that people were not going all the way to 8 - ever - on their regime. What is interesting - was that starting on 2 I had the SAME bad reaction as I had on 8! but I did see on this second month I was moving through the reactions. She also had me change to nighttime. I changed to before dinner, then after dinner.

My headaches and nausea have gone away. I was a little queasy this morning which disappeared with a good breakfast. I awoke at 5:30 am. But I don't wake so "enthused." I have a slow start. I feel like I am okay if I stay centered to whats around me -- but if I want to go out and behave "enthusiastically" (that was a great word you used!) I wouldn't be up for it. Stuck on 4 because I had a long drive, 6 seems okay and I should be moving to 8 about now... but I am hesitating.

I did a lot of work outdoors this weekend and it was slow go. I had something show up in my labs. A 5.5 on the cortisol. Low. I expected high. But like I said -- if I am low on the edge it means something. 2 years ago I was dizzy/lightheaded when I bent over and fatigued easy. Like now! I was laying down on the Tymlos. That was when I started with the endo dr.
I inquired about L Carnitine because it showed up as a deficiency in 2006 with Spectrum. Nobody responded about it. I started on an L Carnitine supplement myself and I got my "go" back. Fast forward to this spring and I acquired IC (interstitial cystitis). Great. Something else to contend with. So I stopped taking my supplements (expect D, Vesepa, biotin, E). Got really fatigued again and floaty. Had a low cortisol test. All of a sudden I realized that I might really NEED the L Carnitine and to stay on it. But my PCM doesn't know anything about it. She had me do the tests but no one looked at the results! Will talk to my doc about it and the endo guy but don't think I will get too far. Like you said - they are distracted and overworked. But my point is about "causation." In part, it might be I have an L-Carnitine issue that timed out with the Tymlos.
If we know that there is no longer a 2 year limit - what is important to know? That I take the dosage slowly to build up and I CAN take breaks around times where I need to focus to work or do I give up work for 2 years to accommodate the Tymlos (at which point I'm probably going to need to retire out of it.) you can google search my name Lori Escalera and click on google images and see my work. Chalk in the street.
I want to talk about the pain I associate with the Tymlos. That's a whole separate topic!
Thanks for your time! 🥰

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@sue6

I got tinnitus during my fifth week on Forteo. I wasn’t on it long enough to see any gains. My doctor took me off of it. I suffer most days with the tinnitus. Now instead of dealing with my osteoporosis, I spend my days trying to deal with the tinnitus. It has ruined my life.

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I had tinnitus before starting Foreto. For years it was just white noise; then suddenly I was hearing a high pitched tone. I went to my audiologist. She said that I did have some hearing loss, which she said causes tinnitus. She said I didn't necessarily need hearing aids but that they would help the tinnitus. She was absolutely right. I got them and haven't had the high pitched tone since. They come with an app that allows you to select different options, depending on your environment; for example, I'm a singer and when I select "music," it's easier to hear my voice over the accompaniment; if I'm in a noisy restaurant, there's a directional option that focuses the sound directly from the person in front of you (or to the side as the case may be), and the extraneous noise is dampened. You might want to consider checking it out. The brand is Widex and Medicare completely pays for it.

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vkmov, the high pitched tone was suddenly after starting Forteo? I'm wondering because I've read other reports of tinnitis after beginning Forteo.

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@gently

vkmov, the high pitched tone was suddenly after starting Forteo? I'm wondering because I've read other reports of tinnitis after beginning Forteo.

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No. I had it before I started Forteo. Unrelated.

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