Hesitant to begin drug treatment for my osteoporosis

Posted by artistel81 @artistel81, May 14, 2024

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.

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Profile picture for holls25 @holls25

I can fully understand your hesitation and starting treatment for osteoporosis. My mom had osteoporosis and lost 5 inches in height in one year and now I’ve been diagnosed with it. My doctor wanted me to start Prolia (sp?) and I’m trying to research as much as possible before starting because of the cost on Medicare it’s just under $2000 and if Medicare decides to not cover it I’ll be in a whole lot of trouble because I live on a very limited Social Security disability monthly amount.

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My Prolia injections ( 2 per year) cost $1260 until 2020 when it could no longer just be given to me by my endocrinologist but NOW have to go to an infusion center which bills Medicare $4250!!!!! I walk in, they ask my birthdate take my blood pressure, give me the shot ( takes in total about 15 minutes) and bill $4250!!!! When the current administration says Americans are being fleeced, they are correct.
I would suggest- if you have to go the drug route, to try Evenity first...which is not as HARSH as Prolia. Also, religiously take your max of Calcium, Magnesium, and Vit D supplements each day.
I now have 3 endocrinologists that tell me that Forteo like drugs are my only recourse. This is not an option for me........

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I do an annual infusion, no issues. You should do it if your Doctor recommends. Breaking bones with Osteoarthritis is the last thing you want to do. Dexa is really accurate, don’t let anyone tell you otherwise

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Profile picture for debbclay @debbclay

My Prolia injections ( 2 per year) cost $1260 until 2020 when it could no longer just be given to me by my endocrinologist but NOW have to go to an infusion center which bills Medicare $4250!!!!! I walk in, they ask my birthdate take my blood pressure, give me the shot ( takes in total about 15 minutes) and bill $4250!!!! When the current administration says Americans are being fleeced, they are correct.
I would suggest- if you have to go the drug route, to try Evenity first...which is not as HARSH as Prolia. Also, religiously take your max of Calcium, Magnesium, and Vit D supplements each day.
I now have 3 endocrinologists that tell me that Forteo like drugs are my only recourse. This is not an option for me........

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I 100% believe you should listen to a doctor and not take medical advice from folks online.

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Profile picture for gently @gently

debbclay, will you be prescribed treatment during your study. Will they use bone markers during testing. Your warning is greatly appreciated. Obviously, we won't be sufficiently warned by the the FDA or Amgen, if they won't even include your experience in their records.

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I get immediate results,but they are only collecting data for their study. Unless I take Forteo or another drug, no one is interested in offering any assistance. Live and learn....AND BE CAREFUL what you agree to ingest! thank you for replying.

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Profile picture for the @the

I 100% believe you should listen to a doctor and not take medical advice from folks online.

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My doctors do not believe in chiropractors or naturopaths, bu my last doc said that there were natural approaches for a long time before we had all of these drugs and eating healthy, taking the correct supplements, and doing weight-bearing exercise is the way to go IF I can not afford or am too skeptical about Forteo or the other drug.
It has been a year and a half since I stopped Prolia and my last dexascan ( 2 days ago) has not changed........my numbers are still osteopenia.
We shall see..............thanks .

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Profile picture for the @the

I 100% believe you should listen to a doctor and not take medical advice from folks online.

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Which doctor's advice do you 100% take advice from when they all have a different opinion. Folks on line at Connect don't give medical advice. We do talk about our personal experience with medications. And often suggest that you ask your doctor (as I did in response to your post), about a medication or side effect. There is a big safety net here. You can't get any of these medications without a physician's approval--prescription. If you are thinking that your doctor is omniscient, he just isn't.

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Well, you’re right and wrong. People criticize doctors which is wrong since they have no
Medical background or complete information concerning the posters medical conditions. Doctors are not omniscient but lay people have no business criticizing other people’s doctor’s opinions. Plus my doctor is a she!

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Profile picture for debbclay @debbclay

Since I have been on Prolia for 15 years, I would suggest starting with a
drug like Evenity that is less caustic... once you stop you either go on a drug like Forteo ($5000 a month)-injected each day) or you are SOL. Getting your jaw chiseled away - because of the jaw necrosis from Prolia, is not fun.

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What is jaw necrosis?
I can’t shut my jaw all the way when I try to bite down and my jaw is painful

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