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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I was on it for 24 months. In the first week I had a couple of small reactions (I don't even know if they were caused by Foreto). After that, nothing at all. The biggest problem was getting distracted while injecting. It was boring.

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@broken13

I had excellent experience with Forteo. I do understand how scary it is though. I had no choice to over think it as I had several spinal fractures to deal with. I can tell you the daily injections (I did mine at night) were not a big deal and pharmacy will do your first one with you if you like). Only mild headaches at first and then fine. I did the full 24 months as my T-Score was -3.5 and fracture risk high. That was in 2016. I have not fractured since. I followed up with Raloxifene . Just doing another course of Forteo now. Plan is for 6 months and then Evenity. (I am very nervous of Evenity! and may just do 4 months of it in stead of the full year)
I wish you the best. I am very grateful to Forteo!

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I had no noticeable side effects with all 12 months of Evenity and great gains. Good luck to you.

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@broken13

I had excellent experience with Forteo. I do understand how scary it is though. I had no choice to over think it as I had several spinal fractures to deal with. I can tell you the daily injections (I did mine at night) were not a big deal and pharmacy will do your first one with you if you like). Only mild headaches at first and then fine. I did the full 24 months as my T-Score was -3.5 and fracture risk high. That was in 2016. I have not fractured since. I followed up with Raloxifene . Just doing another course of Forteo now. Plan is for 6 months and then Evenity. (I am very nervous of Evenity! and may just do 4 months of it in stead of the full year)
I wish you the best. I am very grateful to Forteo!

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I took Evenity for a year and improvement was very good. I had no noticeable side effects.

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Hi Mayblin. Spine T-Score before Forteo was -4.1 and Femoral neck -2.8. They could not read the lumbar spine after Forteo due to the previous fractures. Femoral neck improved -2.5, no further fractures. Bone scan of spine showed previous fractures in the spine (13) healed well. I started the Forteo again because I was having back spasms and terrified of breaking again. I was to start Evenity, but having trouble getting it covered. Forteo was easily approved for another 2 years. I am thinking now I will just stay on Forteo, as Evenity seems to have more side effects and is very expensive. If my insurance does decide to cover it, they may not re-approve my Forteo. It's pretty bad that these medications cost so much money and all have risks. Forteo seems the least in that regard. Also, with not able to tolerate Prolia or Fosomax, I have a fairly clean slate to fully benefit from Forteo again.
With the black box warning removed from Forteo, you would think there would be more research interest in those of us braving another course of Forteo.

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@gravity3

I took Evenity for a year and improvement was very good. I had no noticeable side effects.

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thank you Gravity3. I just spoke to my Pharmacist and I am feeling better about Evenity. He assured me I could go back to Forteo if I should have unmanageable side effects with Evenity. Nice to have backup plan. Evenity will be more money, but my insurance will cover 70% so that helps.

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@broken13

Hi Mayblin. Spine T-Score before Forteo was -4.1 and Femoral neck -2.8. They could not read the lumbar spine after Forteo due to the previous fractures. Femoral neck improved -2.5, no further fractures. Bone scan of spine showed previous fractures in the spine (13) healed well. I started the Forteo again because I was having back spasms and terrified of breaking again. I was to start Evenity, but having trouble getting it covered. Forteo was easily approved for another 2 years. I am thinking now I will just stay on Forteo, as Evenity seems to have more side effects and is very expensive. If my insurance does decide to cover it, they may not re-approve my Forteo. It's pretty bad that these medications cost so much money and all have risks. Forteo seems the least in that regard. Also, with not able to tolerate Prolia or Fosomax, I have a fairly clean slate to fully benefit from Forteo again.
With the black box warning removed from Forteo, you would think there would be more research interest in those of us braving another course of Forteo.

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Thank you very much for your reply @broken13 . I'm sorry to hear that you have to deal with fractures, and am relieved to hear that you are being treated with an osteoanabolic again. The good part is that you are indeed in a relative clean slate - raloxifene, unlike other antiresorptives, is not known to blunt pth analogs' effect according to past clinical studies. That being said, the effects of retreatment with Forteo is yet to be studied thoroughly. Also, the sequence from Forteo (or Tymlos) to evenity or vice versa definitely need to be explored in clinical studies. Please keep us posted with your bone journey and wish you the best!

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here is a link to a video on Forteo -
Dr Nancy Lane recently was a guest speaker on
Osteoboston.
She has done a great amount of research on
bone health.
Her presentation is on bone health and PTH.

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Does anyone know what qualifies as sever osteoporosis? Like so many others I’m reluctant to start drugs however my dr. has recommended that I start tymlos, forteo or Evenity. My Tscores were -2.6 in both hips, -3.3 in spine. I have read that these drugs are meant for older people with lower scores? I’m an active 66 year old. Walking or hiking almost every day. I also eat healthy with protein, veggies and calcium and I just recently started resistance exercise. I really don’t want to be on drugs with these terrible side effects I read about for the rest of my life.

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@lurawilson

Does anyone know what qualifies as sever osteoporosis? Like so many others I’m reluctant to start drugs however my dr. has recommended that I start tymlos, forteo or Evenity. My Tscores were -2.6 in both hips, -3.3 in spine. I have read that these drugs are meant for older people with lower scores? I’m an active 66 year old. Walking or hiking almost every day. I also eat healthy with protein, veggies and calcium and I just recently started resistance exercise. I really don’t want to be on drugs with these terrible side effects I read about for the rest of my life.

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I've taken fosomax for 5 years, forteo for 2 years, Evenity for 1 year, just had my first shot of Prolia. I have had no noticeable side effects from any let alone "terrible" side effects. Of course we are all different. Just wanted to offer another experience and perspective. Good luck.

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@gravity3

I've taken fosomax for 5 years, forteo for 2 years, Evenity for 1 year, just had my first shot of Prolia. I have had no noticeable side effects from any let alone "terrible" side effects. Of course we are all different. Just wanted to offer another experience and perspective. Good luck.

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Will you continue with Prolia or switch to another medication after 2 months as some have mentioned doing?

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