Prolia treatment for osteoporosis: What is your experience?

Posted by Veruska @veriska, Mar 7, 2017

I received the results from my bone test and they have recommended I start Prolia. I have read the side effects and I am concerned. Has anyone use this drug and if so what side effects have you experienced. Thank you

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@bonnieb49

Thanks for your quick reply...I would love to know what my other options are...I was on Fosamax 10 yrs ago and improved...now Lumbar Spine and Femoral are -2.7 & - 1.8..can one go back on Fosamax after being off for about 10yrs.? Thank You Much...Bonnie

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Ask you doc! I believe that a bisphosphonate is the only choice but that is based on reading Great Bones and what my docs say. I would also ask about the effects of being on an anti-resorptive for some years then followed by another anti-resorptive.

Have you been off the Fosamax for some time?

My docs will "lock in" my gains from Tymlos with Reclast (or Fosamax if I cannot handle it), a bisphosphonate by infusion. He says I can take a med break depending on monitoring results.

I don't know if the same is true for Prolia. McCormick's book "Great Bones" discusses the transition from Prolia to Reclast. The standard timing is 6 months after the end of the Prolia but he cautions there is variability and if done too soon, it won't work, and if done too late, fracture risk is great. He says blood testing (P1NP and CTX) should be done to make sure the timing is right.

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Yes, I've been off Fosamax for 10yrs..I just wrote my Dr. & he did mention a bone specialist and gave me his name...I'm not so sure about that suggestion, as I don't look at my scores as horribly high...I guess this Prolia has just put a scare into me...thank you so much for your thorough reply...

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@bonnieb49

Yes, I've been off Fosamax for 10yrs..I just wrote my Dr. & he did mention a bone specialist and gave me his name...I'm not so sure about that suggestion, as I don't look at my scores as horribly high...I guess this Prolia has just put a scare into me...thank you so much for your thorough reply...

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Your scores aren't that low...the terminology can be confusing 🙂 I wonder if you could follow a holistic regimen for awhile. Some of us consult with Keith McCormick, who wrote "The Whole Body Approach to Osteoporosis" as well as "Great Bones. Glad you are also seeing an endocrinologist. Good luck!

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@bonnieb49

Thanks for your quick reply...I would love to know what my other options are...I was on Fosamax 10 yrs ago and improved...now Lumbar Spine and Femoral are -2.7 & - 1.8..can one go back on Fosamax after being off for about 10yrs.? Thank You Much...Bonnie

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I have a friend who is 86. She has been on Boniva for 20 years. And, No, her doctor has never given her a break from it. She exercises with me at our town's rec center.

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Prolia caused a lot of my hair to fall out. Since then I have been diagnosed with 3 autoimmune diseases. Sjögren’s, Lupus and Raynards. Has this happened to anyone else? I have deep pain I’m my legs. Like the bones hurt.

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@pami

I have a friend who is 86. She has been on Boniva for 20 years. And, No, her doctor has never given her a break from it. She exercises with me at our town's rec center.

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Thanks So Much...20yrs is a long time..no side effects? Bless Her...is Boniva an injection or pill, or? Thanks Again...Bonnie

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Needed root canal. Infection in fourth root, unable to be seen on my dentist's x ray, infection had spread to bone. Ouch! Went emergency to excellent root canal specialist. He asked if I had been taking Prolia. If I had he might not be able to proceed. I therefore have decided not to take Prolia. I am new to this blog and am finding it very important to learn from f

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@dsummers1339

Prolia caused a lot of my hair to fall out. Since then I have been diagnosed with 3 autoimmune diseases. Sjögren’s, Lupus and Raynards. Has this happened to anyone else? I have deep pain I’m my legs. Like the bones hurt.

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I too had significant hair loss that I believe is from Prolia. I had five injections over 2 1/2 years and decided to stop. My endocrinologist told me I had to do something and we landed on Evista because it can reduce the risk of breast cancer, which I have had. But in reading articles about the drug, I found a person shouldn’t take it if they’ve had BC! I stopped taking it and am now using homeopathic methods. Will be meeting with my integrative medicine doctor tomorrow and will report back if I learn anything useful.

I really don’t want to take Reclast as it too lists possible hair loss as side effect. I know bones are more important than hair, but it’s alarming to be able to be able to see your skull! Many oral medication are off the table for me due to GI issues.

Thanks to all for sharing knowledge and experiences.
Cindy

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@shula

What is BC?
Shula

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OK...I figured it out...Breast Cancer.

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