1. < Osteoporosis & Bone Health

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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bee1950 | @bee1950 | May 21, 2023

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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2 replies
sue6 | @sue6 | May 21, 2023
In reply to @leeosteo "sue6, I'm sorry to hear about your experience with Forteo. Did you switch to another osteo..." + (show)
@leeosteo

sue6, I'm sorry to hear about your experience with Forteo. Did you switch to another osteo med?

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Not yet. My doctor wants me on Evinity, but I know of others who got tinnitus while on Evinity and others said it mad their tinnitus worse.

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ans | @ans | May 21, 2023
In reply to @susanfalcon52 "I couldn’t afford the Forteo and my doctor was getting it from a drug rep for..." + (show)
@susanfalcon52

I couldn’t afford the Forteo and my doctor was getting it from a drug rep for me. I used that and she was trying to get more. Warning - this is a terrible story - my doctor fell and broke her neck. She was stabilized and in rehab. I had had a dexa right before that and she called from rehab to tell me that I had significant improvement with just the 4 months of Forteo. A few days later, she died. Her nurse called me to tell me this and also said that they had four months of Tymlos in the frig and that Dr. L would want me to have it.
So, that’s why the short course of both drugs.
I went to see my rheumatologist because I needed someone to follow my bone health. He looked like he was going to cry because Dr. L was beloved in our community. He told me that he would put me on Evenity when I finish the Tymlos. I take my last dose of Tymlos today and my first dose of Evenity day after tomorrow.
So, the short courses of Forteo and Tymlos wasn’t about tolerance. It was about cost.

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Though an absolute horrible story, thank you for that explanation!! Good luck to you as you begin Evenity!!

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nancyoinnc | @nancyoinnc | May 22, 2023

Condolences to you and the family and community of your late Doctor L. Carpe diem, friends, tomorrow is never guaranteed.
The only side effect I'm having from Forteo is gaining a couple of pounds of increased belly fat . I will have a DXA in August at the soonest, one year into Forteo treatment. I don't love the injections or the cost (which will be capped at $2000 for anyone on Medicare in 2025, ((legislation passed last year)), AFTER I've completed my 2 years, boo for my wallet but yay for everyone else). I cannot take alendronate due to a bad stomach, and am reluctant to go on Prolia because it takes 6 months to wear off if there are bad side effects.

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leeosteo | @leeosteo | May 22, 2023
In reply to @bee1950 "Hi, I’ve been on Forteo for 15 months without any side effects. My recent bone density..." + (show)
@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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bee1950, thanks for the LillyCares tip. Would you know the income cutoff?

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1 reply
bee1950 | @bee1950 | May 22, 2023

Hi,
Check the website for the application—www.lillycares.com or call the Lilly Cares Foundation Patient Assistance Program at 1-800-545-6962 for the income limits.
Take care

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lkel | @lkel | Oct 15, 2023
In reply to @leeosteo "bee1950, thanks for the LillyCares tip. Would you know the income cutoff?" + (show)
@leeosteo

bee1950, thanks for the LillyCares tip. Would you know the income cutoff?

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The income cutoff is quite "generous". The cutoffs are determined by the Tier level. Forteo is way up there in Tier number. (I don't remember what it was.) My doctor kept saying "apply, apply". I waited a couple of months and finally looked it up and applied. I just finished treatment (24 months) and LillyCares covered it all. Very pleased with the results.

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1 reply
lkel | @lkel | Oct 15, 2023

I started Forteo September 7, 2021. I finished September 30, 2023. Twenty four months is the standard treatment. For some rare cases, it can be thirty six months.

My side effects seemed minimal. There was some bone pain about 3-4 weeks in. It lasted a few days and didn't come back.

My Dexa scans showed 9% density gain. 4% the first year and 5% the second year. I would use Forteo again.

I am taking Fosamax (Alendronate Sodium) once a week.

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1 reply
leeosteo | @leeosteo | Oct 15, 2023
In reply to @lkel "The income cutoff is quite "generous". The cutoffs are determined by the Tier level. Forteo is..." + (show)
@lkel

The income cutoff is quite "generous". The cutoffs are determined by the Tier level. Forteo is way up there in Tier number. (I don't remember what it was.) My doctor kept saying "apply, apply". I waited a couple of months and finally looked it up and applied. I just finished treatment (24 months) and LillyCares covered it all. Very pleased with the results.

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lkel, thank you so much for your response. It's good to know how well Forteo worked for you. Did your Dr need to provide a "prior authorization" to Eli Lilly (Lillycares) before they would accept your application? Just curious if I could get the ball rolling then hand to my Dr to complete the process.

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lkel | @lkel | Oct 15, 2023

My doctor prescribed it, When I found out what my cost would be I told the doctor I could not afford it. The clinic I go to has someone that works on finding funds for patients that can't afford the copays (or any of it). This is the person at your clinic I would try to find. That person pushed at me to apply anyway. I finally did.

LillyCares sent me a card with their contact information. I uploaded it.
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