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?

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@gently

@cue, I haven't heard of anyone fainting after taking Forteo. It does dilate your blood vessels, drop your blood pressure and increase your heart rate immediately after the injection. These effects can lead to imbalance. Usually you are back close to normal after 4 hours.
Pretty amazing that you ruptured your spleen by falling. It sounds awfully painful.
If you take the injection after a hydrating glass of water and a little salt, maybe an olive, you can mitigate the blood pressure drop. I'd go from 100/60 to 80/40 or 50, but I never felt it anything.
I'd say take the injection sitting down and then just be careful for a few hours. Don't move about too fast, plan one of your easy activities until you understand if and how if will affect your balance.
I hope this medication is as kind to you as it is to me. It's my favorite of all the medications because of the mechanism of action that builds strong integrated bones.

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Thank you for your suggestion. Did you have any side effects? I've read so many bad reviews that I'm afraid to take it now so your experience is helpful.

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Cue, I haven't had any negative effect with Forteo.
While some do have side effect, the thing to remember is that you can stop the medication. Forteo is one that clears the bloodstream quickly. If you happen to be allergic to one of the excipients, stop the the injections and give Tymlos a try. Some can't tolerate Forteo, but do well on Tymlos. It is another medication that is cleared rather quickly from the bloodstream. So, you are only risking misery for a day.
There is validity to the argument that your body may adjust to these medications. But I don't think we should power through.
Another valuable thing about these two medication is that if you can't tolerate either, it's a signal to look carefully at your parathyroid glands and your kidney function. Usually if the function of either is compromised, once remedied the anabolic can be continued.
I hope Forteo works well for you and that you join me.

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@cue

I'm 89 and have been prescribed Forteo for osteoporosis. I'm recovering from two vertebrae compression fractures. The pharmacist said that I shouldn't get up fast or could experience dizziness or fainting. There is a big difference between the two. Dizziness is a warning to sit down but there is no warning in fainting. If I were to faint I probably would be worse off than never taking any medicine. I have only fainted once and it resulted in a ruptured spleen. Has anyone or do you know anyone who has experienced fainting while taking Forteo?

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I have always just taken my injection before bed.

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Taking Forteo shots daily for almost a year for severe Osteoporosis. I've had no side effects. It's time to do another bone density to see where I'm at. If it helped, we'll switch to once monthly Prolia indefinitely.

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nancyzuccarelli,
have you, yet, considered another year of Forteo. I keep reading that it is important to take the full course. Usually the bone gain after the first year isn't so remarkable, but the second year reveals the full advantage.
I didn't have much change after the first year. It takes longer to work because it actually corrects weakness
in the bone instead of (like Prolia) preserving fissured bone and layering new bone over that fissured bone.
You may not have the option of Prolia indefinitely.

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Been on it 5m . No side effects and no scan to see any improvement but do know I am feeling stronger and can do more w/o bone break

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@loriesco

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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Can you try doing it in the evening before bed to stave off some of the dizziness?

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@janflute

I have been approved to take Forteo for a third year. Since I started Forteo I have noticed that my stomach has become like a round large ball.I am thin, so this is noticeable. I wonder if anyone else has had this happen to them. My internist wants me to have a KobRad Abdominal X-ray. Way too much X-ray exposure for me to have right now, so I wanted to know if this producing stomach is fairly common with Forteo users. I am 77.

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Yes, I have only started Forteo 2 months ago but I fractured my T-spine prior to starting it. My stomach is exactly as you describe but I am sure it's because my spine has gone into Kyphosis due to the break making it more noticeable. I'm pear shaped and have always had a very flat thin midline. Using a brace helps a bit to make it less noticeable.

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