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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How do you afford Prolia if you are not on Medicare?
The cheapest way I found so far is to purchase through Walgreens and then take to doctor to inject. The cost Walgreens quoted me was 2000.00!
When I went through OSF Healthcare for the first shot they charged 9000!!

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@kjane322

Why am I having side affects from Prolia when others are not? I’ll answer my own question. Everyone’s body and chemical make up is different. I’m told I should stay on Prolia for two years before I find out if it’s helping. So difficult to make that decision if I’m in pain.

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Jane322 I am also having serious side effects from taking Prolia. The first shot in February 2022 I only had some hair loss and didn’t relate it to Prolia. My second shot August 2022 and within 2 weeks I started to experience bone and joint pain in my right hand, hips and thighs. As of today I still cannot write with a pen because I cannot bend my thumb without excruciating pain. Also, I broke my toe in June and it was 80 percent healed and that also is now inflamed. X-rays were taken about 2 months ago. I am seeing my rheumatologist this week to get my test results and I know it’s not going to be good news. I am not going back on Prolia. I made an appointment with a certified dietitian/nutritionist to see if I can heal naturally with food and supplements. The thing that scares me the most is that once you have taken Prolia and stop (I am informed) you need to start another osteoporosis drug.
Like you, I believe everyone tolerates drugs differently. I have been doing a lot of research on osteoporosis and ordered books including Mayo Clinic’s book. I need to truly understand this disease. Also, there is a lot of information on different web sites.
Good luck to you!

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@lpenny

Jane322 I am also having serious side effects from taking Prolia. The first shot in February 2022 I only had some hair loss and didn’t relate it to Prolia. My second shot August 2022 and within 2 weeks I started to experience bone and joint pain in my right hand, hips and thighs. As of today I still cannot write with a pen because I cannot bend my thumb without excruciating pain. Also, I broke my toe in June and it was 80 percent healed and that also is now inflamed. X-rays were taken about 2 months ago. I am seeing my rheumatologist this week to get my test results and I know it’s not going to be good news. I am not going back on Prolia. I made an appointment with a certified dietitian/nutritionist to see if I can heal naturally with food and supplements. The thing that scares me the most is that once you have taken Prolia and stop (I am informed) you need to start another osteoporosis drug.
Like you, I believe everyone tolerates drugs differently. I have been doing a lot of research on osteoporosis and ordered books including Mayo Clinic’s book. I need to truly understand this disease. Also, there is a lot of information on different web sites.
Good luck to you!

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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 had a video session with Mayo Clinic Endocronlogist. He was very helpful.
I don't think he is going to recommend Prolia.
He referenced research that within 6 months of stopping it you will go back to the baseline where you started when you started Prolia and the risk of fractures when you stop.
I had luck with Reclast previously . I have a follow up with the Mayo Clinic doctor once he gets my Dexa scan images from my local provider

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@hlp123

Thank you for your up-date. Yes, definitely, we all want to avoid a broken hip. I am at high risk for fracture without impact for my left hip. I try to walk every day to get my weight bearing exercise and I take Calcium and vitamin D3, but I still worry about my hip. Unfortunately my doctors told me a year ago that Prolia was the best way to protect my hip. We did not anticipate the severe side effects I would experience with Prolia and I certainly did not know that I would experience the difficulty of what to do when I decided to stop taking Prolia. I am continuing to hope that Reclast is the answer for me.
Thank you so much for sharing your journey through this part of our lives !
My best to you !

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Hip 123, did you end up continuing Prolia? Did you start something else? How are you doing now? I’m so confused as to how to go forward when in so much pain with Prolia.

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@jagilles

I just had a video session with Mayo Clinic Endocronlogist. He was very helpful.
I don't think he is going to recommend Prolia.
He referenced research that within 6 months of stopping it you will go back to the baseline where you started when you started Prolia and the risk of fractures when you stop.
I had luck with Reclast previously . I have a follow up with the Mayo Clinic doctor once he gets my Dexa scan images from my local provider

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jagilles, two questions.

Are you a patient of Mayo Clinic or did you video with Mayo Clinic Dr as a second opinion. Does Mayo Clinic accept patients via telehealth from anywhere?

Did the Mayo Clinic Endocrinologist mention that you could follow up Prolia with a bisphosphonate to save the gain from Prolia? I ask this because my PCP is recommending Prolia up to 10 yrs followed by Fosamax?

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@kjane322

Hip 123, did you end up continuing Prolia? Did you start something else? How are you doing now? I’m so confused as to how to go forward when in so much pain with Prolia.

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I understand how you feel !!
I did follow up with more Prolia, after one year of Prolia I had an infusion of Reclast last March. I want to stop all the bisphosphonates now ! I have many health issues to address and I want to focus on them. Having teeth extracted, needing shoulder replaced etc. I am very frightened about what will happen since my Dexa reports that I am at high risk for fracture without impact ! The fear and stress are un healthy, so I try to take it one day at a time and pray that I do not have any fractures. My doctors are still insisting that my pain has nothing to do with Prolia or Reclast. It means so much to me to have the support of members of this group so I do not feel alone. Please, Let me know what you decide to do.
Good Luck

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After receiving my first shot of Prolia, I had some discomfort in my hips and lower back. Because the discomfort and pain happened a few weeks after the shot, I never realized nor did my GP, (my OB-Gyn gave me the shot), that it was from the Prolia shot.
I got the second shot six months later and have had intense pain in my hips, groin, lower back, thighs and knees ever since.
It has been 7 months since last shot. I still have a lot of pain and am in physical therapy.
I would tell anyone getting this shot to talk to there doctor about all the side affects and watch carefully for them after each injection.

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I had my third shot this past January. I can't say I've noticed anymore discomfort then I have been having, turned seventy last June. Actually the pain I am having can be from many different reasons, so I wouldn't want to discourage someone from getting the injections. I wasn't able to take Risedronate. I'm having a Dexa scan first week in April, so hopefully Prolia is making a difference. I'll post more after the scan.

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@jagilles

How do you afford Prolia if you are not on Medicare?
The cheapest way I found so far is to purchase through Walgreens and then take to doctor to inject. The cost Walgreens quoted me was 2000.00!
When I went through OSF Healthcare for the first shot they charged 9000!!

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I live in Mexico and cannot use my Medicare here. I've been receiving Prolia injections for the equivalent of $500 USD per injection. I know it's the real deal, not a fake. How can there be such a great difference in price?

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