Hesitant to begin drug treatment for my osteoporosis

Posted by artistel81 @artistel81, May 14 6:30am

Hello! My first post here as a new member. I am an active 69 year old female who was diagnosed many years ago with osteopenia but now have osteoporosis. When diagnosed with osteopenia I gave several drugs a try. I had side effects from all the oral choices I took, and when giving myself Forteo shots, broke out in hives all over my body. After that, I decided I would take my chances and go the natural route to keep my bones healthy with diet, consistent exercise and Calcium/Vitamin supplements. Fast forward to present time my last bone density scan was worrisome, (a -4,4 T score in my spine). An endocrinologist strongly suggested treatment, (shots or infusions), but I still fear side effects. I am currently trying to educate and empower myself by researching all options. I am already a bit overwhelmed with so many differing opinions. Drugs or no drugs?! The possible serious side effects of drug treatment still frighten me. Has anyone here diagnosed with more advanced osteoporosis, remained fracture free? Am I at such a high risk that I’m doomed without drug treatment? Thank you in advance for any advice, experiences, etc.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Good evening @windyshores, Do you know where the information about negative cancer presence with Forteo and Tymlos might be recorded?

May you have happiness and the causes of happiness.
Chris

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@windyshores

Forteo and Tymlos do not cause bone cancer. Not a single human case. That is old information.

We posted above about Evenity and heart issues. I have afib and had no hesitation taking it.

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Thank you for that info!!!
Do you go to a doctor at Mayo?

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@grammy9

Thank you for that info!!!
Do you go to a doctor at Mayo?

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One more thing: the two year limit has been lifted after the black box warning on bone cancer was removed from Forteo. The same will no doubt happen with Tymlos: it is just newer.

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@grammy9

Oh my that does seem like a bad dexa scan number. May I ask what your height and weight is? I am 4 11 and weigh 125. I also question my numbers because of being petite but doctors don't agree.

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Hi grammy9.......I am 5' 1 (or maybe 5' 0' by now, but not sure) and weigh 99 lbs. Yes, I have found you can never say anything to a doctor that may differ from what they think is set in stone, or may suggest they don't know everything.

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@windyshores

One more thing: the two year limit has been lifted after the black box warning on bone cancer was removed from Forteo. The same will no doubt happen with Tymlos: it is just newer.

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Thank you!

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@artscaping

Good evening @windyshores, Do you know where the information about negative cancer presence with Forteo and Tymlos might be recorded?

May you have happiness and the causes of happiness.
Chris

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@artscaping the lifting of the black box warning and extension of treatment duration for Forteo is all over the Internet. Sorry I would have posted sources but it is pretty common knowledge at this point though old info is still online and confusing.

As a quick example of sources: https://www.ccjm.org/content/88/9/489

Here is a more detailed study review:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9465003/
some quotes:
"No cases of osteosarcoma were observed in the clinical trials of patients treated with teriparatide"

"These studies showed no increase in osteosarcoma in patients using teriparatide compared with unexposed groups, as well as to the expected population‐based background incidence of the disease. Based on this real‐world evidence and the totality of data collected from postmarketing use and other clinical investigations, the label was updated in 2020. The changes included addition of information from large observational studies using real‐world evidence, removal of the boxed warning, and a revision of the 2‐year lifetime limitation."

It is also in Keith McCormick's book "Great Bones," and two of my doctors have told me this as well. Several others have posted on these changes on Connect.

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@lolamarie

Hi grammy9.......I am 5' 1 (or maybe 5' 0' by now, but not sure) and weigh 99 lbs. Yes, I have found you can never say anything to a doctor that may differ from what they think is set in stone, or may suggest they don't know everything.

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So haven't been on the tymlos or forteo yet? You are not doing anything yet?
I am getting a second opinion and then hopefully will make a decision. My spine dexa score is -3.2.

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@windyshores

@lolamarie why did you lose hope about Tymlos? I had amazing gains. Many others have posted on their success in getting onto a therapeutic dose by starting with 1/4 dose and moving up. That option should be reassuring for you. I had NO side effects on 1/4 dose and after maybe 6 weeks I could do 7/8 dose very tolerably, even though initially a half dose was torture. I hope you will try this. I actually miss my Tymlos!

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I have a long history of not tolerating pharmaceuticals and even some supplements. I've also had adverse reactions to homeopathic remedies. They have sent me to the ER numerous times throughout my life....that's why I am not hopeful about Tymlos no matter how many other people are fine with it.

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@grammy9

So haven't been on the tymlos or forteo yet? You are not doing anything yet?
I am getting a second opinion and then hopefully will make a decision. My spine dexa score is -3.2.

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No I'm not doing anything yet because I just got diagnosed, and the doctor wants to run some more tests, and I'm still in shock, sort of. I've been checking things out...but whatever I do, I won't rush into anything... after all, I did not get this way overnight and there isn't a quick fix.

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@lolamarie

I have a long history of not tolerating pharmaceuticals and even some supplements. I've also had adverse reactions to homeopathic remedies. They have sent me to the ER numerous times throughout my life....that's why I am not hopeful about Tymlos no matter how many other people are fine with it.

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@lolamarie I am also sensitive to many things: foods, meds, scents etc. I have a long list of meds I cannot take and am limited in treatments. I also have lupus and atrial fibrillation which limit drugs. For years I tried osteoporosis drugs and could not tolerate them, During cancer treatment my endocrinologist was too nervous to prescribe Reclast, which landed me in a dire situation with fractures.

Tymlos was a godsend for me, because after going to the ER after a full dose, I restarted at 1/4 dose and slowly moved up. It felt miraculous as I was able to consistently do almost a full dose for the rest of the two years and my spine went from severe to borderline.

You may find you tolerate something else so not suggesting anything just letting you know that many of us are very very sensitive to meds but find something that we can tolerate that works.

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