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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I have been on Prolia for three years and am about to request another med. I have experienced severe back pain, constant uti, itching under the skin (from neck to wrist on left arm) and now hair frontal alopecia. Don’t know if all these things are connected but I seemed pretty healthy before Prolia. Is there anyone out there that can recommend another med with relatively fewer side effects? Would love to hear from you.

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@kjane322

I’ve been dealing with even more side affects. Yet I’ve come to realize it doesn’t matter what decision we make about Prolia because either way there is pain. If I don’t get the injection then the bones become weak and fractures are painful. As we age that alone is pain. So the answer to all this is to do your best everyday to keep moving. Try to eat the right foods. Try to keep a good frame of mind knowing none of us gets out alive. We all suffer as our bodies wear out. I’m grateful I have Tylenol for the little it helps. I can’t help wondering if physical therapy could help? Praying always helps….even if only in my mind. Try to stretch and keep moving ……slowly and deliberately.

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I just joined Mayo chat line....I had 2 Prolia injections. I have osteopenia not osteoporosis. Since I took those injections, I have pain in my shoulder like tendonitis. Had some physio etc but doesn't go away. I recently did a blood test and it showed an increase in cholesterol (LDL) and I never had any cholesterol problems before....now that I read the side effects of Prolia, I believe that these two are associated with Prolia. I plan to go off of it. People need to take enough Vit D and K and do weight bearing exercises to build and maintain healthy bones.

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I would avoid it....had 2 shots and want to get off of it due to higher cholesterol (mine was always normal) and pain in shoulder/rotator cuff that isn't going away.

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@dolan

I am currently on my 3rd year of Prolia. I have NO side effects. I ended up switching doctors after approximately 15 years because of insurance problems/non reimbursements. I was 'freaked' out of my comfort zone and in the middle of treatment. I saw a new endocrinologist who agreed with the treatment as I have Systemic Mastocytosis and have had multiple fractures as well. I will continue on Prolia this year (June/May injections). See the endocrinologist and have my 1st DEXA scan after the start of Prolia. We may return to the 2 year Forteo as I had incredible results from that several years ago. I would highly recommend Prolia if needed.

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Hi “Dolan”
I’m curious how you are doing since you mentioned you have systemic mastosytosis as that is very rare and I have it as well. I see the review you did was back in 2017 and would like an update. Since we mast cell disease people have issues with meds I was curious how things are still going for you. I have also had multiple fractures from this disease, 5 in my back to date. Thanks for your review, hope to hear how you are doing. ~Susan

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HI it's really good but if you have any kind of teeth feelings anything to do with your mouth inside your mouth you can't get it worked once you start taking paroleia you can't even get a abscess pulled so if you have anything wrong with your mouth get it fixed now before you start taking it but otherwise it's pretty good

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@cairnmama

I, too, was concerned about the many side effects. I have been on Prolia for 2 years (ie. 4 injections) and have had no side effects. My latest bone density test showed an increase in density, which is the best part!

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I have been on Prolia for two years with no side effects. My last Dexa scan classified me as having Osteopenia instead of Osteoporosis. I had my last shot in December and will get the next one in June. I have not broken any bones since I have been on Prolia. Prior to that, a bone in my upper back broke while I was simply standing and talking to my daughter. The pain was intolerable and I was rushed to the hospital and then sent home with three months of bed rest. The second episode occurred the same way only this time it was at the right of my spine. I have had no further occurrences since being on Prolia.

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@yvie

I have been on Prolia for two years with no side effects. My last Dexa scan classified me as having Osteopenia instead of Osteoporosis. I had my last shot in December and will get the next one in June. I have not broken any bones since I have been on Prolia. Prior to that, a bone in my upper back broke while I was simply standing and talking to my daughter. The pain was intolerable and I was rushed to the hospital and then sent home with three months of bed rest. The second episode occurred the same way only this time it was at the right of my spine. I have had no further occurrences since being on Prolia.

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My mother was on Prolia and lost all of her teeth which depressed her as she had spent $1,000's of dollars on implants, etc. At this time she was in Assisted Living. My sister, a Registered Dietician spent many hours with the kitchen staff trying to improve the flavor of her meals. In the meantime I was sending her handmade chocolates. She carefully place one on her palette every night so she could fall asleep happily. // I'm taking Tymlos.

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@yvie

I have been on Prolia for two years with no side effects. My last Dexa scan classified me as having Osteopenia instead of Osteoporosis. I had my last shot in December and will get the next one in June. I have not broken any bones since I have been on Prolia. Prior to that, a bone in my upper back broke while I was simply standing and talking to my daughter. The pain was intolerable and I was rushed to the hospital and then sent home with three months of bed rest. The second episode occurred the same way only this time it was at the right of my spine. I have had no further occurrences since being on Prolia.

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Thank you for the hug, Sarah. I need one today.

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@sarahstuart

My mother was on Prolia and lost all of her teeth which depressed her as she had spent $1,000's of dollars on implants, etc. At this time she was in Assisted Living. My sister, a Registered Dietician spent many hours with the kitchen staff trying to improve the flavor of her meals. In the meantime I was sending her handmade chocolates. She carefully place one on her palette every night so she could fall asleep happily. // I'm taking Tymlos.

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Oh, my! I did not know you could lose all your teeth from Prolia. I knew you could get necrosis of the jaw. I wonder if that is what your mother had. My dentist told me it was so rare that I should not worry about it and I haven’t but after hearing your story, I am! You are a good daughter and I will put both of you on my prayer list. I have a lot of thinking to do before my next Prolia shot which is supposed to occur at the end of June. Thank you so much for sharing your mother’s tragic story. God bless her…and you. Yvie

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