← Return to Forteo (teriparatide) followed by HRT: My Experience

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@mayblin: I've only had DEXA scans every 2 years since I was in my forties. (73 now) My endocrinologist has NEVER mentioned bone turnover markers; I've learned about this only recently from this forum. My intent is to bring it up to her on my next visit. When I was on forteo, in my 50s, it had a black box warning and thus I was told that one was only allowed to be on it for 2 years b/c the long term effects weren't known. So when I finished my 2 years, and was taken off of forteo, my doctor wanted me to go on Prolia. But it had only been on the market for 2 years and I declined. Like I said, I kept my gains on estrogen, a very low dose patch of .025. After 15 or so years on the low dose estrogen patch I got breast cancer, stage 1. At this point I'd like to say both my sisters also got breast cancer ( though none of us tested positive for the BRCA gene) and one of my sisters was never on estrogen replacement therapy. And, the gynecologist who prescribed the estrogen patch told me studies showed that estrogen therapy alone (without progesterone) didn't significantly raise one's risk for breast cancer. But, alas, the oncologist wanted me to stop taking it. That's when I finally relented to go on Prolia. I was fine for 5 years on it, but got sick and ended up in the hospital with sepsis from a bladder infection shortly after being injected with a Prolia copy-cat drug, Jubbonti, that's only been on the market for 3 months as my health care organization switched b/c they could get the copy-cat biosimilar at a cheaper price. By the way, if one is so inclined, there is a great study on the National Institute of Health's library that clearly states 1 in 33 recipients on Prolia (and by extension one can include Jubbonti as it has the same active ingredient) get a uti after receiving the drug and 5% develop pneumonia. Of course, all drugs come with side effects and it's a risk to benefit decision. In my case, after 5 years on Prolia with no side effects, I refuse to have the copy-cat version, Jubbonti, injected into my body again. Now that I have learned on this forum that one is not limited to forteo for only 2 years, I am going to consult with my oncologist about taking this anabolic again. Since it is a bone building drug, I want my doctor's opinion if there's an outside chance it could in any way wake up any possible dormant cancer cells. My preference would be to go back on forteo. If I am advised not to, my next step is to have my endocrinologist try and get an exception for me to stay on Prolia rather than the new Jubbonti drug. If I don't get the exception, I will try and find an independent endocrinologist who isn't part of a corporate health care system and is therefore not bound by their prescribing constraints.

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Replies to "@mayblin: I've only had DEXA scans every 2 years since I was in my forties. (73..."

@mkoch Thank you very much for sharing your story, it’s so valuable to hear a long-term perspective. Forteo followed by estrogen clearly worked very well for you in maintaining Forteo gains for many years. I’m sorry you had to face breast cancer and stop estrogen - it really highlights how important it is to weigh risk versus reward and to keep monitoring over time.

From what I’ve read, after long-term Prolia treatment, switching straight to Forteo hasn’t worked well in clinical trials, with BMD often decreasing. Definitely worth discussing carefully with your doctor. Please keep us posted. Your experience gives the rest of us a lot to learn from.

@mkoch According to my endocrinologist one can take Forteo for two years (and only ONCE in a lifetime). His intent is to best hold off on Forteo until or if a fracture happens down the road. In other words, don't use Forteo unless you have had a fracture or is a real high risk for Osteoporosis fracture (and can only use it once in your lifetime).

@mkoch thank you for the information!