Has anyone got cancer or heart issues after taking Forteo, Tymlos, or?

Posted by grammy9 @grammy9, Oct 13 5:52pm

Has anyone got cancer or heart issues after doing the Forteo, Tymlos, or Evenity injections? What's the longest anyone been off these drugs?

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I don't have heart issues exactly, but my PVCs got way worse, and I got horrible muscle weakness, on Tymlos. I was on it 7 months. I tried cutting back to 50mcg, and I felt great, although the PVCs have persisted, only less. The doctor says 50 isn't enough, and wants to switch me to Forteo. I don't know if it will have the same side effects, though.

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Thank you for your experience!

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No heart problems just a lot of pain in my hands and feet with Tymlos. Even though I adjusted the dose it seems to accumulate. I’m going to try Forteo
Soon ….. I hope I don’t have the same reactions because it was unbearable.

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@susyt

I don't have heart issues exactly, but my PVCs got way worse, and I got horrible muscle weakness, on Tymlos. I was on it 7 months. I tried cutting back to 50mcg, and I felt great, although the PVCs have persisted, only less. The doctor says 50 isn't enough, and wants to switch me to Forteo. I don't know if it will have the same side effects, though.

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@susyt my doctor was happy with 40mcg, happier with 60mcg. Have you had bone marker testing or a DEXA to see if the Tymlos is working?

Forteo is 20mcg/day. Tymlos is 80mcg for full dose. Forteo) is an FDA-approved parathyroid hormone analog, and Tymlos is an FDA-approved parathyroid hormone-related protein analog for osteoporosis. I don't know if the dosages can be directly compared. I had more of a reaction to Forteo.

Tymlos has a preservative, so it can be out of the refrigerator, and Forteo doesn't. Apparently some people might react to the preservative.

I have dramatic afib episodes once a year that land me in the ER or once, ICU, but didn't have one a single episode on Tymlos. We are all so different!

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I just had my bone marker testing, and come to think about it, my doctor didn't even discuss those results! I need to call him about that.
I don't think my doctor actually knows a lot about osteoporosis treatment. When we talk, he is looking stuff up on the Internet and reading about it. It seems odd to me.
My next Dexa isn't until June.
Good to know about those dosages with Tymlos. I really don't want to deal with Forteo if it needs to be always refrigerated. Bad enough having this degenerative disease, and not being able to enjoy my old age (and hopefully retirement soon) without babysitting medication for 2 years! 2 years is a big percentage of my remaining good years!!

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Hopefully you won't have to take any of these meds if your doctor hasn't mentioned?

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@susyt

I just had my bone marker testing, and come to think about it, my doctor didn't even discuss those results! I need to call him about that.
I don't think my doctor actually knows a lot about osteoporosis treatment. When we talk, he is looking stuff up on the Internet and reading about it. It seems odd to me.
My next Dexa isn't until June.
Good to know about those dosages with Tymlos. I really don't want to deal with Forteo if it needs to be always refrigerated. Bad enough having this degenerative disease, and not being able to enjoy my old age (and hopefully retirement soon) without babysitting medication for 2 years! 2 years is a big percentage of my remaining good years!!

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If your doctor is a primary care doctor, he probably doesn't know anything about osteoporosis. It really requires a specialist. My doctor just read the DEXA report and advised the same treatment that was literally printed on the report ("take Fosamax and repeat scan in two years.") I did NOT follow that advice.

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@grammy9

What did you do?

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I consulted with Dr. McCormick, but I also saw an endocrinologist. Both suggested either Tymlos or Forteo as a first step. That was preceded by blood tests; the endocrinologist has his set, and McCormick has some specific ones he likes to check. I also made sure I was getting enough calcium and vitamin D3, and I added vitamin K2 to the mix.

Keep in mind that none of these doctors always have the answer. I asked McCormick how I ended up with this, and he didn't know. I am guessing that it was a lack of calcium/D. As a man, I honestly didn't pay much attention to calcium. I worked out and ran, so I guess I assumed that was enough for strong bones.

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