1. < Osteoporosis & Bone Health

Osteoporosis and Forteo (teriparatide): What to hear experiences

Posted by ans @ans, Feb 16, 2023

Wanting to hear people’s experience with using Forteo generally , good and bad. Concerned about having to travel and keeping it at the 36-46F range. Also would like to hear from those that used it 15-20 years ago and if any medical issues have come about that are related to Forteo.

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barbjo | @barbjo | Apr 28, 2023
In reply to @barbjo "I certainly can relate to your hesitation about the very long list of side effects. My..." + (show)
@barbjo

I certainly can relate to your hesitation about the very long list of side effects. My dr. did give me the form from the manufacturer to fill out to get Forteo for a reduced cost. He knows I’m on Medicare. I was not eligible for their help because my husband is still working. My co pay is still around a $1000 a month. My goal is to take the Forteo for up to two years and then take a less expensive maintenance drug. I had very early surgical menopause which has caused me to have pretty severe osteoporosis.

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Update: copay for third month $240. Yeah!

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1 reply
bee1950 | @bee1950 | Apr 28, 2023
In reply to @elizabethaames "Linda, did they give you a 'timeline' as to when it's supposed to 'kick in' and..." + (show)
@elizabethaames

Linda, did they give you a 'timeline' as to when it's supposed to 'kick in' and show the most improvement? I'm only 7 months on Tymlos and am asking about a shift to Forteo due to the neuropathy...but they just did labs on me and said it may not be causally linked...so I'm just trying to 'stay the course' as long as I can as my values were so lousy before any improvement would be a 'must' according to them... just figuring if it's a Forteo vs Tymlos call. Have you had any side effects or neuropathy/tingling/cramping in toes and such?

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Elizabeth,
I don’t recall receiving any info about a timeline from a Dr. I do think that on this forum it was suggested that the most gain occurs within the first year. I have had challenges with cramping in my feet & calves for many years so that’s not due to Forteo in my case! I’m sorry to hear you are experiencing that problem. I hope that you’ll be able to stay the course for as long as possible. Take care

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ssapp1 | @ssapp1 | Apr 29, 2023

@windyshores My Endo put me on Forteo (teraparatide) because it has been approved for more than 2 years. I was on Tymlos for 2 years, then prolia, Evenity, now teraparatide. I had the best results on Tymlos. To be fair when I had my bone density scan I had only been on teraparatide for a few months.
My muscles in my back are really sore, but I don’t think that is from the medicine; probably the way I hold myself.

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ssapp1 | @ssapp1 | Apr 29, 2023
In reply to @barbjo "Update: copay for third month $240. Yeah!" + (show)
@barbjo

Update: copay for third month $240. Yeah!

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If you have regular insurance (not Medicare), there are manufacturers coupon you can get. I paid zero the whole 2 years I was on Tymlos and I am paying zero for Forteo (generic Teraparatide).

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ssapp1 | @ssapp1 | Apr 29, 2023

I called the pharmacist regarding this and he said that as long as it hasn’t been out of the refrigerator for 36 hours, then it’s fine. You can also get little coolers (smaller than a lunch bag) that you can carry your medicine in. I am traveling in a week and I bought one on Amazon. It has small ice packs for it.

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2 replies
barbjo | @barbjo | Apr 29, 2023
In reply to @ssapp1 "If you have regular insurance (not Medicare), there are manufacturers coupon you can get. I paid..." + (show)
@ssapp1

If you have regular insurance (not Medicare), there are manufacturers coupon you can get. I paid zero the whole 2 years I was on Tymlos and I am paying zero for Forteo (generic Teraparatide).

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That’s good to know too. I had major sticker shock at first. I should have called Medicare right away .

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tetris | @tetris | Apr 29, 2023
In reply to @ssapp1 "I called the pharmacist regarding this and he said that as long as it hasn’t been..." + (show)
@ssapp1

I called the pharmacist regarding this and he said that as long as it hasn’t been out of the refrigerator for 36 hours, then it’s fine. You can also get little coolers (smaller than a lunch bag) that you can carry your medicine in. I am traveling in a week and I bought one on Amazon. It has small ice packs for it.

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Also, as an FYI, last week I spoke with a nurse educator at Lilly who said it is 36 *cumulative* not-refrigerated hours for one pen, assuming it is at temps between (I think) 47-77 degrees. Example: if pen is not refrigerated for 12 hours one day and the same pen is not refrigerated for 10 hours another day, it has not been refrigerated for 22 cumulative hours.

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milkweed | @milkweed | Apr 29, 2023

Thank you, very helpful

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ann707 | @ann707 | Apr 29, 2023
In reply to @ssapp1 "I called the pharmacist regarding this and he said that as long as it hasn’t been..." + (show)
@ssapp1

I called the pharmacist regarding this and he said that as long as it hasn’t been out of the refrigerator for 36 hours, then it’s fine. You can also get little coolers (smaller than a lunch bag) that you can carry your medicine in. I am traveling in a week and I bought one on Amazon. It has small ice packs for it.

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I traveled with forteo and never had a problem. A lunch bag with blue ice. Carry your prescription with you and let them (TSA) know you have it when you get to the screening, if flying . The blue ice may freak them out. If I was at a hotel I kept the pen in the bag in the frig in the room. I didn't trust the frig not to freeze.
Have a good trip!

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nancyoinnc | @nancyoinnc | May 1, 2023
In reply to @milkweed "Yes sarcoma was a concern but speaking with the pharmacist she looked it up and it..." + (show)
@milkweed

Yes sarcoma was a concern but speaking with the pharmacist she looked it up and it said the black box had been removed, however it was still on the actual prescription. Did your areas of injection bruise or become sore/swollen? You’re lucky that your Dr is being proactive. I should have been put ON SOMETHING when I discontinued topical HRT. I was on the next to lowest dose for many years

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I couldn't take HRT due to personal and family history. I did try it twice after menopause, and had horrible reactions (weight gain, depression/dysphorias). I inject my inner thighs because the fat is looser there--when I injected the area around my navel, the fat somehow pushed the injection dose out, I guess because the fat is denser there?? My thighs look like I've gone nine rounds with a very small boxer, if I hit a blood vessel.

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