1. < Osteoporosis & Bone Health

Forteo vs. Tymlos: Which did you choose?

Posted by suze317 @suze317, Oct 17, 2018

I have to make a decision on Forteo vs. Tymlos and am not sure what to choose. Forteo has been around a lot longer, but has to be refrigerated. Tymlos only around 1 1/2 years but is shelf stable and seems to have less side effects and less issues with calcium. Can anyone offer their perspective? Thank you!

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lkel | @lkel | Mar 23, 2022
In reply to @egrolman "I’m finishing up my two years on Forteo and haven’t had a single negative side effect...." + (show)
@egrolman

I’m finishing up my two years on Forteo and haven’t had a single negative side effect. My numbers improved at the one-year bone scan and I anticipate my second one to show further improvement. Not sure yet what I’ll do after the two years are up; I have an appointment in a few months with the endocrinologist. The refrigeration issue hasn’t been an issue at all and Forteo is easy to travel with.

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I've been on Forteo for 6 months. I am glad my Endo prescribed it. It's very easy to use. I had some minor side effects in the first 2-3 weeks but none after that. I travel regularly with it and have no problems with that.

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windyshores | @windyshores | Mar 23, 2022
In reply to @lkel "I've been on Forteo for 6 months. I am glad my Endo prescribed it. It's very..." + (show)
@lkel

I've been on Forteo for 6 months. I am glad my Endo prescribed it. It's very easy to use. I had some minor side effects in the first 2-3 weeks but none after that. I travel regularly with it and have no problems with that.

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I could not tolerate Forteo. My heart sped up and I felt like I was going to pass out, and my lungs had an icy pain. I went to an immunologist to try to get on it by desensitization but the same thing happened, even at 10% of the normal dose. The immunologist said my immune system had "gone awry." I wondered if I had some sort of sensitivity to the carrier solution rather than the active medication itself.

Several years passed. I tried to get on a study for the Tymlos patch, thinking Tymlos injections might have the same effect and that a patch would be gentler. I offered to drive 4 hours a few times a month. I was all set to go when they called and said that the two doses of Forteo in the past, disqualified me.

Then I fractured three lumbar vertebrae and went on shots. I am relieved and happy that I can take Tymlos. It's been 6 months. As I have written here already, I started at 2 clicks of the pen and have been on 7 clicks for months. I still can't handle 8 clicks. My doc is thrilled with 6 or 7.

If anyone else cannot handle Forteo, don't make the same mistake and assume that Tymlo would also be a problem. And vice versa. They both affect parathyroid function, but there are differences in how they work and differences in inactive ingredients as well.

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meg01 | @meg01 | Jun 20, 2022
In reply to @leacy "Thank you for reaching out to me. I’ll be happy to check out these links, and..." + (show)
@leacy

Thank you for reaching out to me. I’ll be happy to check out these links, and hear from others.
That is also what I know about TYMLOS, that detail is attractive to me. I have not been treated for osteoporosis before. Every two years, I went to radiology for bone density tests, each test progressively worse, not reaching osteoporosis til this year. Then I was referred to, Center for Osteoporosis, UCONN Musculoskeletal Institute. Come to find out in my spine I have 1or 2 vertebrae @ 3.4. After a urine test I was told I make bone at a normal rate, but lose it faster than I make it. Due to an unrelated chest X-ray, 2 more vertebrae were detected one crumbling, another almost. That’s my history in a nutshell. Now I’m trying to learn as much as I can. Once I hear back from my PCP, I asked for her opinion of TYMLOS, and want her to be aware I’ll be on it. This next week, I’ll know if my insurance will help with prescription costs, then shortly thereafter, I’ll begin treatment.

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Hi, I am in Connecticut and just wondered which dr. you saw at UConn that prescribed Tymlos as I would like to try this route to help save my bones. Thank you!

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nanasandy | @nanasandy | Jul 24, 2022
In reply to @lalee "Hi I am in the exact position! However Forteo for me is the cost. With insurance..." + (show)
@lalee

Hi
I am in the exact position! However Forteo for me is the cost. With insurance my cost is $900 a month. Impossible for me. Have u found that to be true for you?

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I have been told two prices. One was $900 and the other was $1400. Way out of my comfort zone!

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2 replies
windyshores | @windyshores | Jul 25, 2022
In reply to @nanasandy "I have been told two prices. One was $900 and the other was $1400. Way out..." + (show)
@nanasandy

I have been told two prices. One was $900 and the other was $1400. Way out of my comfort zone!

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@nanasandy have you looked into the patient assistance programs at Radius (call Together with Tymlos) or Lilly Cares (Forteo)?

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lkel | @lkel | Jul 25, 2022
In reply to @nanasandy "I have been told two prices. One was $900 and the other was $1400. Way out..." + (show)
@nanasandy

I have been told two prices. One was $900 and the other was $1400. Way out of my comfort zone!

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Your health care provider should be pushing you to apply for assistance with the co-pay. Forteo is one of the drugs that is higher tier. That changes the income range you can fall in and still receive assistance. My provider pushed and pushed me to apply. So thankful!

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cabba | @cabba | Jul 25, 2022
In reply to @youngtwin "I understand your concerns about side effects of Tymlos or Forteo..But studies have shown that not..." + (show)
@youngtwin

I understand your concerns about side effects of Tymlos or Forteo..But studies have shown that not treating your osteoporosis is much worse..The benefits outweigh the risks..For instance the biggest problem I had was the one side effect of osteiocarcinoma, in short, bone cancer..I believe that only one human got that, but she had cancer & radiation at a time in her life..they pretty much linked it to that..Another thing, is don't smoke..your ruining your chances of building bone at all! I have been injecting Tymlos for 2 months now, the side effects are mild..the only one I experienced is a headache for the first 3 or 4 days (not a migraine) and a slightly rapid heartbeat...you just feel a little hyper but it didn't slow me down...The injections are a piece of cake..takes me 5 minutes and done. My osteoporosis is in my lower lumbar....a second opinion is good, but probably will be the same recommendation...mine is not genetic, it's probably due to dieting etc during my 30's 40's, trying to have that perfect body...I wish you luck with everything!

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Hello.
I know this post is old, but can you please tell me where you found the information of a human getting osteosarcoma from Tymlos? I thought it was only found in rats. I am only doing my homework on this and your help would be greatly appreciated. Thank you!

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Mentor
John, Volunteer Mentor | @johnbishop | Jul 25, 2022
In reply to @cabba "Hello. I know this post is old, but can you please tell me where you found..." + (show)
@cabba

Hello.
I know this post is old, but can you please tell me where you found the information of a human getting osteosarcoma from Tymlos? I thought it was only found in rats. I am only doing my homework on this and your help would be greatly appreciated. Thank you!

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Hi @cabba, I'm not sure @youngtwin is still following Connect but hopefully she will see your question and reply. I did find some information on the topic that may answer your question.

" Has Tymlos caused osteosarcoma in humans?
You shouldn't use Tymlos for more than 2 years. This is because Tymlos and other parathyroid medications may increase your risk for developing osteosarcoma (a form of bone cancer). * Parathyroid medications work to increase bone density and strength."
-- Tymlos (abaloparatide): Side effects, dosage, and more: https://www.medicalnewstoday.com/articles/tymlos

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1 reply
cabba | @cabba | Jul 25, 2022
In reply to @johnbishop "Hi @cabba, I'm not sure @youngtwin is still following Connect but hopefully she will see your..." + (show)
@johnbishop

Hi @cabba, I'm not sure @youngtwin is still following Connect but hopefully she will see your question and reply. I did find some information on the topic that may answer your question.

" Has Tymlos caused osteosarcoma in humans?
You shouldn't use Tymlos for more than 2 years. This is because Tymlos and other parathyroid medications may increase your risk for developing osteosarcoma (a form of bone cancer). * Parathyroid medications work to increase bone density and strength."
-- Tymlos (abaloparatide): Side effects, dosage, and more: https://www.medicalnewstoday.com/articles/tymlos

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Thank you John!
This is very helpful and up to date information.

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1 reply
windyshores | @windyshores | Jul 26, 2022
In reply to @cabba "Thank you John! This is very helpful and up to date information." + (show)
@cabba

Thank you John!
This is very helpful and up to date information.

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@cabba and @john bishop the two year time limit was lifted on Forteo because not a single person got osteosarcoma from it. The black box warning is gone.

Tymlos is newer but I have heard the same thing will happen with Tymlos.

I have had breast cancer so if that cancer spread to my bones, these meds could be a problem because they grow bone. But even with that history, I feel perfectly safe on Tymlos.

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