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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@milkweed

A bone specialist has recommended that I start Forteo (teraparatide )treatment because I’ve had 6 stress fractures in 2 years all occurring in my lower legs. I also have a diagnosis of osteopenia & osteoporosis. My overall health is good however I was diagnosed 4 years ago with Thrombocytosis ( too many platelets) . I’m 71, very active and until the stress fractures started I was very fit. Exercising is a challenge now as I am non weight bearing on my R leg while a navicular fracture is healing. Thanks for any help.

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I took Forteo for four months- until I ran out - and had no side effects and did see some bone improvement. Good luck!

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@milkweed

A bone specialist has recommended that I start Forteo (teraparatide )treatment because I’ve had 6 stress fractures in 2 years all occurring in my lower legs. I also have a diagnosis of osteopenia & osteoporosis. My overall health is good however I was diagnosed 4 years ago with Thrombocytosis ( too many platelets) . I’m 71, very active and until the stress fractures started I was very fit. Exercising is a challenge now as I am non weight bearing on my R leg while a navicular fracture is healing. Thanks for any help.

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Hi,
I’ve been taking Forteo for 13 months without any side effects. I’m 73 & active with osteoporosis for many years. I have a bone density test scheduled next week & plan to report my results…hopefully improvement!
Take care,
Linda

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@milkweed

A bone specialist has recommended that I start Forteo (teraparatide )treatment because I’ve had 6 stress fractures in 2 years all occurring in my lower legs. I also have a diagnosis of osteopenia & osteoporosis. My overall health is good however I was diagnosed 4 years ago with Thrombocytosis ( too many platelets) . I’m 71, very active and until the stress fractures started I was very fit. Exercising is a challenge now as I am non weight bearing on my R leg while a navicular fracture is healing. Thanks for any help.

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I will start my third pen tonight. It is going well. I have occasional mild pain in one of my hips. I’m hoping that means it’s working.

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@milkweed

A bone specialist has recommended that I start Forteo (teraparatide )treatment because I’ve had 6 stress fractures in 2 years all occurring in my lower legs. I also have a diagnosis of osteopenia & osteoporosis. My overall health is good however I was diagnosed 4 years ago with Thrombocytosis ( too many platelets) . I’m 71, very active and until the stress fractures started I was very fit. Exercising is a challenge now as I am non weight bearing on my R leg while a navicular fracture is healing. Thanks for any help.

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I started Forteo last July. I have osteoporosis, extremely active, teach fitness classes, eat perfectly, and am 76. At first I experienced some unpleasant side effects. They all went away. I feel great now and am thrilled to be taking Forteo! I just hope that it will be approved to take for three years, not two.

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@bee1950

Hi,
I’ve been taking Forteo for 13 months without any side effects. I’m 73 & active with osteoporosis for many years. I have a bone density test scheduled next week & plan to report my results…hopefully improvement!
Take care,
Linda

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Please do! Eager to hear outcomes as I'm having some side effects on Tymlos after 6 months and would like to see if Forteo is a switch possibility (denied by my insurance initially as Forteo is evidently is more costly)

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@milkweed

A bone specialist has recommended that I start Forteo (teraparatide )treatment because I’ve had 6 stress fractures in 2 years all occurring in my lower legs. I also have a diagnosis of osteopenia & osteoporosis. My overall health is good however I was diagnosed 4 years ago with Thrombocytosis ( too many platelets) . I’m 71, very active and until the stress fractures started I was very fit. Exercising is a challenge now as I am non weight bearing on my R leg while a navicular fracture is healing. Thanks for any help.

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@milkweed , be sure to do some resistance training with your upper body, whatever you can do. Last year (at age 65), I broke my ankle and had 3 months of bed rest, "toes above nose" after the surgery, and a further surgery 5 months after the first. I neglected my upper body strength work, and REALLY lost a lot of ability. It's easy to lose, hard to regain. I wish I'd gotten creative with resistance bands and small weights.
After my ankle break, which is NOT considered an osteoporotic fracture, my new endocrinologist started me on Forteo. I've done well with it for 8 months now, will have a DXA at one year, and like another person who posted above, I hope that its 20 year history without human sarcoma as side effect (in premarket testing sarcoma occurred in test animals) will allow use beyond 2 years.

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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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@elizabethaames

Please do! Eager to hear outcomes as I'm having some side effects on Tymlos after 6 months and would like to see if Forteo is a switch possibility (denied by my insurance initially as Forteo is evidently is more costly)

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Hi,
I just had a bone density test after being on Forteo for about 14 months. My previous bone density test was in Nov. ‘21. Altho there was basically no improvement in my left or right hip, my spine improved from -3.6 to -2.9. For the first time I was given a Trabecular Bone Score (L1-L4 TBS) of 1.323. From the range I saw on the report, it was in the “normal” range. I plan to continue on Forteo for the next 11 months & will then evaluate what med is next, if any. I hope this is helpful to anyone considering Forteo which was originally suggested to me over 15 yrs ago! Take care, Linda

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@bee1950

Hi,
I just had a bone density test after being on Forteo for about 14 months. My previous bone density test was in Nov. ‘21. Altho there was basically no improvement in my left or right hip, my spine improved from -3.6 to -2.9. For the first time I was given a Trabecular Bone Score (L1-L4 TBS) of 1.323. From the range I saw on the report, it was in the “normal” range. I plan to continue on Forteo for the next 11 months & will then evaluate what med is next, if any. I hope this is helpful to anyone considering Forteo which was originally suggested to me over 15 yrs ago! Take care, Linda

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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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I thought Forteo had been approved for use past two years-?

I take Tymlos, but not a full dose. Adjusting the dose has helped me minimize side effects. I could not tolerate Forteo and the dose is not adjustable.

I have substantial gains from Tymlos in the 18 months I have been on it. I assume Forteo would have helped too, but I could not tolerate it.

My doc told me the most substantial gains from these meds is in the first year. Gains continue but at a slower rate, he said.

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