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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@windyshores

You can switch to a bisphosphonate, according to McCormick's new book and my doc.

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Second opinion doc yesterday said bisphosphonate is not that effective after Prolia. I did not discuss any further because I am not on Prolia but check it out before making a decision. I didn't get details and it is always possible I misunderstood.

Doc yesterday also discussed doing blood test bone markers while switching to a bisphosphonate to make sure timing is right- recommendation is to start bisphosphonate 6 months after ending Prolia, but if too early the bisphosphonate doesn't work and if too late, fractures from ending Prolia can happen.

Neither of my two (top) endos uses Prolia much anymore because you basically have to stay on it, according to the doc yesterday. She prescribes it for those who cannot tolerate anything else and for those who cannot take bisphosphonates due to kidney issues.

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@JustinMcClanahan

Hello @veriska, @crenhov, @ritafarmer, and @cairnmama, welcome to Connect and thank you for posts about Prolia for osteoporosis. Thank you for jumping in and addressing @veriska's concerns about the side effects of Prolia.

I would like to also invite @kayelle, @tessie, @dolan, @janicec8957, @donna13, and @jaleen, to share their experiences with taking Prolia for osteoporosis in this discussion as well.

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I have been treated for O.A. for three years. I can't remember the pills I was on nut had side effects from that. So have now had 2 shots of Prolia.
I am a participant in the 'Canadian Longitudinal Study on Aging' (CLSA) and this week, I was at McMaster for my testing. My height is now 5' 6.5".... my original height was 5' 8.25".... YIKES!
Is this a lot of height loss in just 5 years???
I am going back to my GP, with this info, but wondering how others have found their disease progression.
Thanks for your input!

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@salisbury2491

I am really concerned about being on Prolia. Been on it 3 1/2 years, very little improvement. I am 87 but always had good balance and very active. I am now having a lot of back pain and my balance seems off at times. I was not told once you start Prolia you cannot go off it. I wish I had never went on it.

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I agree with @windyshores. In fact, leaving Prolia for "alendronate" is what my endocrinologist at Mayo Clinic instructed me to do. So far....so good since June 13, 2022.

Chris

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@thisoldewe

Yes, I take Prolia: one shot every 6 months. My experience is that there has been NO experience: no side effects.
I go for a bone density tomorrow, so perhaps I will know the benefits.
I have a friend who has been on Prolia, for some time, and same absence of side effects.
So onward! All the best as you make your decisions.

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In February, I had a dexascan after a year on Prolia. My spine improved from -4.1 to -3.6! My doctor was surprised as was I. I have had no side effects. My back feels much better since I had suffered a couple of compression fractures before I started Prolia. I had my 3rd shot the first of March. I know it is helping because my back feels so much better. Before Prolia. I couldn't stand very long in the kitchen and cook. Now I have grandkids over to make baked goodies with grandma! I have read that you can safely take Prolia for 8 years. At that point, I hope to combine it with Forteo or Tymlos for a year to help build bone.

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I am 73 and took Prolia 2 times. By the third time I was supposed to take it, I decided not to. I had dermatitis around my lips and a bad shoulder pain. I just stopped it and am fine now! I only have osteopenia not osteoporosis. I now go to a naturopath and she is helping me with my bone health. One of which is to take 2 tblp spoons of black sesame seeds (full of calcium), and Vit D (4000 IU) which I had already been on. Plus get a K vitamin.

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@pami

In February, I had a dexascan after a year on Prolia. My spine improved from -4.1 to -3.6! My doctor was surprised as was I. I have had no side effects. My back feels much better since I had suffered a couple of compression fractures before I started Prolia. I had my 3rd shot the first of March. I know it is helping because my back feels so much better. Before Prolia. I couldn't stand very long in the kitchen and cook. Now I have grandkids over to make baked goodies with grandma! I have read that you can safely take Prolia for 8 years. At that point, I hope to combine it with Forteo or Tymlos for a year to help build bone.

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@pami transitioning from Prolia to other meds is complex and even problematic. I hope you will talk with an osteoporosis expert on this. Keith McCormick's new book "Great Bones" is a good resource. Also Ben Leder MD at MGH has a great video on combinations and sequencing of meds.

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@thisoldewe

Yes, I take Prolia: one shot every 6 months. My experience is that there has been NO experience: no side effects.
I go for a bone density tomorrow, so perhaps I will know the benefits.
I have a friend who has been on Prolia, for some time, and same absence of side effects.
So onward! All the best as you make your decisions.

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Me too, I have been on Prolia for a few years now, and I have not had any side affects. So far, so good.

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I am concerned also, as the side effects seem severe...I would love to hear from anyone taking it and your comments..thank you so much...

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@bonnieb49

I am concerned also, as the side effects seem severe...I would love to hear from anyone taking it and your comments..thank you so much...

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@bonnieb the real issue with Prolia is what happens when you stop. You need to go on Reclast or another bisphosphonate, preferably Reclast, or you rapidly lose bone density and increase fracture risk.

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@windyshores

@bonnieb the real issue with Prolia is what happens when you stop. You need to go on Reclast or another bisphosphonate, preferably Reclast, or you rapidly lose bone density and increase fracture risk.

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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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