Is anyone else afraid to start taking Forteo?

Posted by lauren2024 @lauren2024, Feb 5 6:13pm

Hello, new to this group and newly diagnosed with osteoporosis. I was on Tymlos for five months. Employer switched insurance and now my new insurance company won't approve Tymlos. Insurance company wants me to try Forteo first. I've read alot about Forteo and it scares me to start it. I told my doctor I was on the fence so now not on anything at the moment. Does anyone have experience good or bad with Forteo? Thanks,

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gravity3 | @gravity3 | Feb 8 1:10pm

In reply to @broken13 "Will you continue with Prolia or switch to another medication after 2 months as some have..." + (show)

I'd like to quit Prolia after shots when rebound is not as difficult to deal with and that is why I am having a consult with another endocrinologist. We'll see what he has to say.

lauren2024 | @lauren2024 | Feb 8 9:24pm

In reply to @lurawilson "Does anyone know what qualifies as sever osteoporosis? Like so many others I’m reluctant to start..." + (show)

I can relate @lurawilson
To answer your question, a T-score of -2.5 or lower and at least one fragility fracture is considered severe osteoporosis. My hips are -2.6, spine -3.6 and I was told it was "severe" osteoporosis. When I found out my doctor talked me into Tymlos and I was on that for 5 months with no side effects but could not continue due to insurance. Now he wants to put me on Forteo but after reading about side effects I am hesitant. Everyone's comments above are supportive on taking Forteo so I'm still mulling it over.

blueskies16 | @blueskies16 | Feb 9 12:19am

In reply to @lauren2024 "I can relate @lurawilson To answer your question, a T-score of -2.5 or lower and at..." + (show)

@lauren2024 I'm envious you have a doctor who recommended you take Tymlos/Forteo. My t-scores were slightly worse than yours and my doctor wanted me on a bisphosphate. Luckily, on my request, she referred me to an endocrinologist who cleared me for Forteo. (Tymlos not an option with my insurance. ) I had very strong gains in bone density after the first 12 months. No side effects at all. The only challenge I find with Forteo is that you need plan for its refrigeration when going on multi-day trips/vacations (though your doc may say it's fine to stop for a couple of weeks if needed). Amazon sells medication coolers.

wisfamily | @wisfamily | Feb 20 4:07pm

In reply to @gently "hi lauren, I've had such a good two years with Forteo that I've decided to take..." + (show)

Forteo isnt reccomended longer than 2 years, so please make sure your provider is watching your benefits for a using it a 3rd year and risks carefully.

wisfamily | @wisfamily | Feb 20 4:19pm

In reply to @lauren2024 "I can relate @lurawilson To answer your question, a T-score of -2.5 or lower and at..." + (show)

Hi
I dont think anyone can advise you very well without knowing your medical history and risk factors. However I will tell you that Forteo has been studied better than Tymlos. They are not the same drug but are in the same family .
Forteo does have a generic and Tymlos does not which is likely why your insurance company prefers it. The cost isnt that different though. They could prefer it due to more studies on its use as well.

We just started my Mom on it who has severe osteoporosis and had fractures with Prolia and Evenity . So far she has not had any side effects but its only been 1 month. I am a retired nurse and I personally would choose Forteo over Tymlos based on what I have researched and her providers opinions.

If you do start this , be sure your provider does an initial calcium level ahead of starting it and then levels monthly as well as a 24 hour urine to measure calcium after you have been on it at least a month. The urine will check to see if you are excreting a lot of calcium or material that could cause you to form kidney stones.

There isnt a one size fits all solution for treating osteoporosis. You have to weigh the benefit vs the risks for your situation.

Keep in mind that if you do a year of Forteo , gain enough bone density in that year , they may be able to give you a single reclast infusion to hold you there for a couple of years and let you stop the Forteo.

We have also found that BD 31G utra fine pen needles work well and she doesnt feel a thing. You will need a prescription for a box of the pen needles too since the Forteo pen does not come with any.

Good luck with your decision. 🙂

gently | @gently | Feb 20 4:53pm

In reply to @wisfamily "Forteo isnt reccomended longer than 2 years, so please make sure your provider is watching your..." + (show)

wisfamily, thanks for this thoughtful warning.
The endocrinologist I see told me this morning that he will continue prescribing Forteo until my t-score is -1. He is a bone metabolism expert with 30 years of experience. He monitors everything with exacting scrutiny and orders labs meticulously. Plus he has a good personality.
Since the black box was removed the use of Forteo is shifting, but protocol is slow to change. Doctors need to be careful in selecting patients for longer term use. He has been ordering bone markers for thirty years when even now physicians are neglecting that valuable indicator.
I have a standing order for every three months.
I'm hoping the extended use of Forteo becomes standard; in my opinion Forteo and Tymlos build the strongest, most flexible, integrated bone.
Your concern is appreciated and significant because we have practitioners with a wide range of competence.

gently | @gently | Feb 20 5:04pm

In reply to @wisfamily "Hi I dont think anyone can advise you very well without knowing your medical history and..." + (show)

How lucky to have a daughter that is a nurse. I hope your mom has a good experience on this amazing medication
I hope Forteo will be my only osteoporosis drug. I've had no side effects and decent bone acquisition closing in on my 2nd year.
I am curious about what your research revealed that made you prefer Forteo to Tymlos.
I like them both.