Prolia treatment for osteoporosis: What is your experience?

Thankyou for checking in. I just had the scan Friday afternoon, so I haven’t heard yet.

@JustinMcClanahan I am reading so many positive comments here on Prolia, yet there’s a Facebook page filled with negative comments on Prolia! Now I am confused and don’t know what - or who - to believe!

I started on Prolia in January 5 this year because my physician suggested I take it as a preventative measure because at 74 I am more likely to have a major fracture if I fall. I have slight osteoporosis at the top part of my spine (base of my neck? Don’t know what the vertebrae numbers for that). After reading all those horror stories on the Facebook page - accompanied by a stack of online information that makes my head spin - I am considering not taking any more doses. My second dose is due on July 5.

What should I do??

Good afternoon @rashida, Unfortunately Justin is no longer with Connect. I am happy to respond to your inquiries about osteoporosis and Prolia. One of the differences between Facebook and Connect is the use of mentors and moderators who review every post for authenticity. So....in regards to Prolia, I will be starting it next month after 2 years on Tymlos which was chosen because of a bad reaction to bisphosphonates.

That sensitivity has made me wary. I have found good information by calling the manufacturer, Amgen, and talking to a medical professional. We know that everyone reacts differently in both positive and negative experiences. The studies that have been done indicate that only about 10% of the folks on Prolia have some kind of side effect. Because of the time between infusions, it is not possible to create a test situation. You need to have the entire subcutaneous dosage. For example, I will be staying in the clinic for 3 hours to make sure I have no reaction. If there is a reaction after that, I will proceed to the ER or Urgent Care for assistance.

Would you like to talk to the manufacturer's medical staff? Here is the number: 800 772-6436. Please let me know how it goes for you. Is your clinician a PCP, an Endocrinologist, or another type of specialist?

May you be safe and protected from inner and outer harm.
Chris

I am 71 with femur neck t score of -3.7 in 2021. It was -3.3 about 14 years ago. I took Actonel for 6 years and 8 years of nothing after that. My hip t score is -2 which was also -2 14 years ago and spine number has been the same since 14 years ago and the number is better than osteopina. I think Actonel worked on all parts except femur neck. Recently my endo doctor told me Actonel doesn't work on femur neck and only Polia would.

I read all possible side effects of Prolia and terrified of using it. Endo told me each year I can expect improvement of .1 so this means after 3 years my t score would be -3.4. What good will that do? Take a high risk and gain so little and the gain won't really help, I am still doomed.

My sister said for 14 years i did not break any bones and t score only worsen by .4 so maybe another 14 years I will be just fine. AT that time I will be 85 or dead. Can anyone give me some advice? I am just so depressed and don't know where to go to get a good and right solution.

Good decisions shouldn’t require angst. I am so sorry you have felt this. Please ignore the Facebook bots, and get real information from patients and doctors. I took prolia for a few years prior to the pandemic and my osteoporosis improved, with zero side effects. My doctor actually said the risk was higher coming in for the treatment due to COVID-19 than waiting for the foreseeable future. Which has worked out perfectly since now I have to have a tooth extracted and that lowers my risk for a side effect from it. A good decision is always an informed one. A few comments ago one of the mentors or moderators posted a number for the company, talk to them, then talk to your doctor, then talk to your friends who might also have taken it. Then make an informed decision. Good luck and please take care.

It is so nice of you to write to me. I talked to my endo doctors (2 of them, one in the university hospital), both told me none of their patients had any problems and everything I see online are not real. And I also talked to Prolia and all she said is what is already posted online on their website. She could not tell me what happens after 3 years and she could not tell me if I quit and get on a different drug will preserve what gained from Prolia. Will you tell me what was your t score on femur neck before and after prolia and also are you still on it? If not, why? Thanks in advance for your help. Also why your risk for tooth extracted is lowered?

I am not remembering exactly what my scores were but, I do remember the minus number dropped a full point. I was on on the infusion type which does carry a small risk of osteonecrosis of the jaw, it is a small risk that you won’t heal properly after tooth extraction. The extra time since I have had the infusion further lowers that risk for me. We tried everything to save this broken tooth but it hasn’t been cooperative. I do plan to resume prolia when it is recommended by my doctor. He recommended we temporarily discontinue during the pandemic due to the COVID-19 risk to myself and my family.

Good afternoon, I don't know if I can give you advice. How can I make a difference? I can tell you I went through months of worrying and researching about all post Tymlos options. I had uncontrollable side effects from bisphosphonates so my options were limited. This report by Mayo Clinic was the best I could find as a starter.

With more than a little apprehension, I accepted Prolia. My PCP and the technician giving the injection both told me they had not seen any negative reactions. I trust my PCP totally. Well, it has been two weeks and I have not had any sensitivity or reactions to the first dose. I am relieved and ready to pursue this choice for osteoporosis protection.

Please protect yourself.......all I have to do to motivate myself is to remember how my beautiful mother died. It was from a fall as she reached out to greet me with a hug. The result was a broken hip. She was not even aware of osteoporosis and neither was I.

She never walked again and soon stopped eating and communicating.

Please protect yourself. We are all living longer these days and need our bones to be the best they can be as we age.

May you be free of suffering and the causes of suffering.
Chris

Hi Chris, there are so many wonderful people here to help others. I truly appreciate you and many others who try to help me. First of all, May I ask why a broken hip results in your mother's death? Couldn't they help to replace that hip? How old was she? I am so sorry about your mother's passing I am sure you and her were very close. It is hard to lose someone you love.
About Prolia, you had it 2 weeks ago so side effects can still come. One of my friends did not get sick with infection is about 2-3 months later. If you check online some people did not get sick until the second or third shot. What worries me is that Prolia will make bone healing slower. So if later on we have fractures then it is going to be hard to heal.
Chris, you are extremely nice to help me. It is just so hard for me to make a decision about Prolia. One of the 2 Endo doctors I went to told me that he has treated over 1000 patients and NONE had problems. The other endo told me some people did drop out. I feel doomed because my osteo is severe and I feel if I do it or not to do it there are consequences. I just don't know what to do next.

Good evening, thanks so much for your feedback. I learned some new realities. First of all, my mother did not die from the hip fracture. She was an active go-getter and when relegated to a wheelchair, found little to enjoy about life. I think she could have learned to walk again but chose not to. So....if she had not fractured her hip, things wouldn't have seemed so bleak. She also stopped communicating as depression overtook her.

Re: Prolia reactions. I will withhold further claims about no side effects from Prolia until I have had my next injection or even the third injection. That is good advice. The negative reactions from the bisphosphonate happened with a few days and then got worse.

My indecisive brain is right now remembering how much I stewed and fumed over this decision. I about made myself sick. When they told me how it would be taken care of in the ER for immediate reactions, I felt a bit better. I will stay in touch with you should anything else happen that might be helpful for you and others.

May you be content and at ease.
Chris