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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@njx58

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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@njx58 did you mention to McCormick that you ran? He told me he attributed some of his problems to the triathalons he participated in.

Youa re right that no one doctor has the answers, including McCormick. I think it is wise to benefit from the synergy of more than one opinion as you have!

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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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@susyt - for those of us who have been traveling this osteoporosis journey for a bit of time, I think we would all advise you to seek care from a specialist in the field of osteoporosis…an endocrinologist or rheumatologist. Osteoporosis is a mystery to the everyday family practitioner and it’s not something you want to be left in the dark with after an appointment. Of course, any osteo medication can be troublesome for some, but if you’re educated properly, you can make the best decision based on the advice of an educated professional. You should not leave your doctors office with unanswered questions or doubt. You want to get a handle on your bone loss as quickly as possible and feel confident that the doctor you are trusting with your health, is knowledgeable. Osteoporosis is a diagnosis none of us asked for, but it’s a reality. Thank God we have medical professionals and support groups like this one, to make the journey easier. Blessings to you. Rose 🌹

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My doctor is a rheumatologist. I don't know him from anyone; my osteoporosis clinic closed when that specialist left (2 months after I started Tymlos!), and I had to find someone fast, who was taking new patients. He seems to just look everything up online while he is talking to me. Because the FDA has only approved the 80mcg dose, that is all he wants to work with. I just called Tymlos, and they said they can't advise anything less because that's all the FDA has approved. Does anyone know of a knowledgeable osteoporosis doctor near Baltimore? Johns Hopkins is over a year for a new patient appointment!

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@susyt

My doctor is a rheumatologist. I don't know him from anyone; my osteoporosis clinic closed when that specialist left (2 months after I started Tymlos!), and I had to find someone fast, who was taking new patients. He seems to just look everything up online while he is talking to me. Because the FDA has only approved the 80mcg dose, that is all he wants to work with. I just called Tymlos, and they said they can't advise anything less because that's all the FDA has approved. Does anyone know of a knowledgeable osteoporosis doctor near Baltimore? Johns Hopkins is over a year for a new patient appointment!

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@susyt I sent you a private message (upper right).

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@windyshores

@njx58 did you mention to McCormick that you ran? He told me he attributed some of his problems to the triathalons he participated in.

Youa re right that no one doctor has the answers, including McCormick. I think it is wise to benefit from the synergy of more than one opinion as you have!

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Oh, I was just a casual runner, 15-20 miles a week. I wasn't competing in triathlons like McCormick!

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@njx58

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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to njx58
Unfortunately, the case of doctor who just prescribes Fosamax is very diffused in other countries as well (both family doctors and rheumatologists). The same advice about Fosamax happened to me, and I also did not followed his advice. Trying to have opinions of other specialists too. Hope that you will find the solution for your individual case!

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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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My PVC's and PAC's got way worse too. I saw Cardiology and they put me on Olmesartan and the Pvc/pac's have basically stopped. A few, rarely. But my heart is still thumping for and hour or more after I take the tymlos. I'm at 70mcg.

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@zygote

My PVC's and PAC's got way worse too. I saw Cardiology and they put me on Olmesartan and the Pvc/pac's have basically stopped. A few, rarely. But my heart is still thumping for and hour or more after I take the tymlos. I'm at 70mcg.

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My time on Tymlos was the only two year period I have had since 2015 with absolutely no afib. Usually I have it once or twice a year.

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