Prolia and Osteoporosis

[LadyDi2]

I was diagnosed with osteoporosis in 2018. Just in one hip at the time. I was very surprised as I am a diligent exerciser with weights and I watch my diet. I didn’t want to take any of the oral medicines so chose Prolia. One reason I decided on Prolia was the advice I got from a respected cancer doctor who said definitely do the Prolia. I took the shots for two years and my osteoporosis actually turned into osteopenia. My doctor stopped the shots for two years. Well, next bone scan showed osteoporosis in my hip and spine! Now my doctor is suggesting taking the Prolia again. To add to this story, I developed a blood disorder after the Prolia shots where my body makes too many platelets which has resulted in me having to take a chemo pill to control the production. Has anyone who has been on Prolia developed a blood disorder or any other bad side effect? My doctors all tell me that there is no correlation but I question this!!

[Met00]

You would have only had a bone density measurement for one hip because that's what they usually scan, on the basis that osteoporosis is systemic, so if you measure one hip you can be pretty sure the other will be the same. Had you had any fragility fractures (with little or no impact, eg falling from standing height) before diagnosis? If not, I'm shocked that you were prescribed Prolia if you didn't have osteoporosis in your spine, as it's only meant to be prescribed for those at very high risk of fracture. I'm also astonished that you were told to stop it after 2 years without relaying immediately onto a bisphosphonate, as without that there's a very high risk of rebound fracture the first 2 years after Prolia is stopped! It sounds like you were fortunate, but the fact that your hip returned to osteoporosis and your spine was then in the osteoporosis range too should have been expected, because in the first year after stopping Prolia, the bones become less dense than they were before treatment was started, gradually then returning to pre-treatment density by the end of the second year.

Unless you're able to go onto a bisphosphonate when you stop it, Prolia is for life, so this is something you should consider before agreeing to go back on it.

[Watercolorgirl in reply to Met00]

Yes your absolutely right prolia can cause rebound fractures so they make you stay on it yes for life!! I was lucky and got off it after 1st try and went directly on reclast cause i heard about prolia after I got on it. Ladies please study up on all the bone meds. If one doesn't help or has too many side effects for you stop and go on something else immediately!#!crucial to go on something else though and do not take prednisone!!! Prednisone destroyed my life and delays on getting bone meds because of side effects I had or side effects i read!!if you have osteoporosis you must be on a bone med!##I've had 5 fractures because of delays!! I have kyphosis and 1 hip replacement and need another. My body is destroyed from prednisone!!!If i can help even 1 person from having their lives destroyed from osteoporosis that's my goal so others dont suffer like I have and my family from seeing and having to help me cause I'm disabled now!!! And I'm seriously depressed and have panic attacks from my body crushing on itself. I'm in chronic pain everyday! The more compression fractures you have the more facet arthritis you get and degenerative disc disease which is also excruciating pain!

[Watercolorgirl]

I had prolia and I got high blood pressure and edema in my whole legs and feet. I stopped it immediately and went to once a year recast infusion. If they stopped your prolia they should have put you on something else like reclast!#you need to be on a bone med the rest of your life. Everyone is so worried about side effects and some side effects are defubetly warranted to stop but continuing on something else is a must!!! Delays in bone meds are a detriment to your bone health. I kniw personally. If you get a fracture you can get on tymlos. It reversed my osteoporosis to osteopenia. Can Only take it for 18 months they say. Cause their testing didn't go past 18 months. I think on purpose cause this tymlos works!#! You can only take tymlos or forteo once in your life they say. If insurance denies you have your Dr appeal it! Ladies this drug tymlos works!!!im on here to help people.