Help for Information on Terrosa

[Charlie50]

Hi

Just had VC appt with Rheumatologist, I'm 56 have OP of spine unable to tolerate Zoledronic Acid or Tablets so have been given info on Terrosa with the follow up medication after 18mths of Prolia for some years after then that is it, so basically when I am 68yrs old no further treatment which even Rheumatologist said is a difficult choice... so have anyone else of similar age started this regime? I will be contacting ROS to discuss with them I hope they can be impartial, I'm not great with medication due to EDS & Gut Dismotility. Did ask about a Dexa Scan to see if anything has changed but this was not forth coming which was strange as I was due one prior to Covid-19 closing everything down. I did ask if I didn't have treatment was there any support or at least being monitored was told they would wait until I broke another bone.....! Thank you in advanced...

[Nuthatch]

I’m on my third month of Terrosa now. I was advised I’d need to take something after the 2 years (do you know why you’ve only been offered it for 18 months?). The suggestion at the moment is zoledronic acid but we’ll see. I will NOT be taking Prolia; my understanding is that you must not stop it without moving onto to another drug. The manufacturers acknowledge there is a significant risk of rebound fracture on stopping Prolia without taking something else. Perhaps if your OP is not severe and your bone density improves enough with Terrosa you could try and manage it with diet, exercise and supplements. There’s a lot of information on here about that. I already have 5 compression fractures so I doubt I have an option other than to continue with medication. I’m always hoping they might come up with better treatments before I finish Terrosa!

[AnnieW55]

It is my understanding that once you start Prolia you are on it for life unless you go onto another drug (usually a bisphosphonate). The only safe time to stop Prolia is after 1 injection after that you are at risk of rebound fractures and worsening osteoporosis. Odd that a DEXA wasn’t allowed if you are due one. Please do some reading around this forum - use the search box to help. With so much at stake we need to do a lot of our own research and not blindly rely on our GPs or Rheumatologists. I have heard good reports of the ROS. Best wishes

Have blood tests been done to see if you have secondary reasons for osteo?

[Viazoy]

I agree with the other two replies. Because of medical scheduling mistake my Prolia shot was just several weeks late - enough time to fracture three vertebrae, end my active life forever, and leave me in pain unless lying down. JoansBackboneDisaster.com. I'm eternally sorry I ever started this drug, which I cannot stop now but which is creating other problems for me just the same (such as getting necessary dental work done.