Prolia discontinuation

Hi I've posted a few times about my dilemma with trying to transition from Prolia to something else due to complications with dental work and possibility of ONJ, but I've never really read the breakdown of what happens during rebound when you go off of Prolia. This is pretty scary given the fact that I have been on Prolia for 6 years, meaning I've had at least 12 injections if not 13. I am due for a Prolia shot end of December early January but I'm waiting to get into the endocrinologist to evaluate my parathyroid activity, which is elevated, and to see what my options are for weaning off Prolia. This doesn't sound to promising to me. Does anyone on the thread know just how long someone can be on Prolia before there are other long-term effects? I'm only 70 years old. What if I stay on Prolia till I croak? That could be another 15 years and 30 more shots?? Why was this medication even put on the market? Certainly wasn't told that people who have extensive dental work should not go on it, not by my doctor... I found out on my own.

Did fortibone help you?

Yes you hit the nail on the head I am in a catch 22 because I already have had symptoms of osteonecrosis of the jaw during my dental implant procedure. I had to have the implants removed two weeks later because some bone was erupting through the gum line. I also have elevated parathyroid activity in my last blood work done a month ago so they are suspicious of something else going on with me. I have never had a broken bone in my life and I have fallen many times since I've been on Prolia and before that. I am 70 years old and I'm wondering if my dexa scans could improve even just a little if I could just go off Prolia cold turkey because the alternatives are not promising given the jaw issues and the parathyroid issues. I am in a quandary and now will probably be involving three different doctors well one is a nurse practitioner, the one that administers the Prolia. I guess I can stay on Prolia and look for that window of 5 months out from my last shot, where you can supposedly safely have dental work?

Did you stop prolia with success.? You had posted back in December you thought you were coming off. Wondering how you are doing.

I have not stopped Prolia yet. I had a subsequent injection 7 months after my last shot, so mid January 2025. I have been seeing an endocrinologist to determine whether I have hyperparathyroidism. After several months and several tests, including a nuclear medicine test recently, it was discovered that I indeed do have a tumor on one of my parathyroid glands which has been causing many of my osteoporosis symptoms and high levels of calcium in my blood. The plan is to have the tumor removed and then monitor my blood to see if PHP and calcium levels drop and if the phosphorus level returns to normal. If those changes occur, I can begin to look at weaning off of Prolia and doing a one year regimen of Reclast, followed by weaning off that with the goal to keep my bone density scores closer to osteopenia or normal levels rather than osteoporosis. As far as my dental work that I postponed due to the ONJ risk, the plan is for me to wait till I'm 5 and 1/2 months out from my last Prolia shot to attempt to have one of the implants redone and see how that goes. Supposedly there is a small window of time approximately 2 to 3 weeks before your next Prolia injection that is safe to have dental work. My next Prolia shot is now due in mid July because my last shot was in January. That delay of one month allows me to plan my dental work for late June time frame. Fingers crossed that all goes okay. I will try to update the group with my progress on all of these issues as soon as I have any news to report.

Prolia has been associated with what they call insufficiency fractures. Prolia prevents the bone from renewing and can cause a buildup of weakened bone. While more commonly recognized for femur fracture, Prolia creates the situation in your whole body.
It isn't possible to say if that is what is causing the tibia fractures. In the femur the appearance of this type of fracture is a straight across break instead of a spiral break. You might look at your tibia xray.

Is there something I can take to build my bones? I am already on Calcium and Vit D. Would Reclast be a better option instead of Prolia? Thank you for your help.

Hello. I stopped Prolia all together after 3 shots. I was really concerned about the long term affects. My hair was falling out. My nails would just peel and I was worried about my dental health. I had a lot of back pain, and worried about fractures, which are not uncommon being on Prolia. Also, my calcium levels were very low. You just can’t stop. I went on Reclast. It’s a 15 minute infusion once a year. My nails have been growing again, my hair loss has slowed down immensely and I don’t have the aches and pains like I did previously. After extensive reading regarding Prolia, I was too scared to be on it. Good luck.