Can Prolia be safely and reasonably discontinued?

Please be careful! I can only share my own terrible experience. I'd been on Prolia several years and because of a change of doctors (one retired) my shot was a few weeks late. During that time three vertebrae broke leaving me in constant pain and unable to resume many normal activities, travel, etc. But because I am ON Prolia I have macular degeneration in BOTH eyes requiring treatment by a retinal specialist - which includes periodic shots IN the eye! I wish that I had never gone near Prolia!

I took it three times and after the third, I felt like a had a terrible case of the flu which lasted. Aches, pains, upper respiratory. Saw no difference in dexascan so stopped taking it. Have a friend who took 8 and got hives after the last and that ended her journey with prolia. I try to walk and work on balance but I know there is risk of the F word for all of us over 60 (F word meaning Fall). I guess the ALF has rules which precludes staff but you would think that a call to the woman's insurance company, Like Blues on Call that Highmark offers, would be able to help with a solution. I find Highmark customer reps to be exceptionally patient and helpful.

Prolia is destroying me! Macular degeneration in both eyes which retina specialist tells me is from Prolia. Prolia rep says is because of having osteoporosis -- but I had osteoporosis long before Prolia and guess who I would believe!. I also have three PAINFUL broken vertebrae sustained when my doc retired and new one couldn't see me right away. This delay of a few weeks in getting Prolia shot resulted in the fractures! So it's bad news if I take Prolia and worse if try to stop!

@tarmansbks After you and your friend stopped Prolia, which osteoporosis treatment did you change over to? I am a kidney transplant patient with osteoporosis and I am looking for my best option. I would love to hear your thoughts?.... I am considering Fosamax?

I don't know that Carol is taking anything. She is 88 years old and perhaps feels like it is not worth it. She has minded her husband dying and with covid and isolation, it is hard to think much about the future. I am not at this time taking anything. It's a risk I know but I am seeing a polio specialist in October and will discuss it with him. So many medications may help one thing and exacerbate something else which seems to be my case so often and makes me shy of trying something new.

So sorry to hear of everyone's problems with Prolia. I agree you must be careful with this drug. I am wondering if anyone who has taken or is taking Prolia injections has had problems with ongoing jaw pain that is so severe it impairs chewing, and keeps you awake at night? If so, has your dentist given you any feedback on this? I took Prolia injections for 3 1/2 years, but stopped due to development of MRONJ on one side of my jaw. MRONJ is exposed bone of the jaw. The MRONJ is healing, but I have noticed that the other side of my jaw which does not have MRONJ, has also become extremely painful and stiff. My dentist does not see a problem with the teeth on the healthy side of my jaw. But it has become so painful that I find I must put my food in a mixer to liquify as chewing aggravates the issue so much. I will see my dentist again in a few weeks and review this topic again. So far the only feedback I have gotten is that I could be 'grinding' my teeth at night? Taking one day at a time.

ALF's have to follow strict state regulations on what they can and cannot do. Residents at ALF's are tenants, not patients. Anything outside the scope of practice can cause nurses to lose their licenses as well. ALF's are not skilled nursing. I hire a private nurse to change my mother's colostomy wafer. The ALF also does not do wound care. Perhaps you could hire a nurse to do an injection on site. MY 95 year old mother has trouble getting out of bed, but we get her in a wheelchair and use a chair car to get her to her iron infusions. It's difficult.

I’m so sorry you are having painful symptoms. I also developed mronj after only one prolia injection. For months the pain was constant and almost unbearable. My dentist prescribed antibiotics and chlorhexadine rinse. Finally the exposed bone loosened and the dentist was able to remove it. Following that procedure the pain diminished and the jaw seemed to heal. I am currently seeing a rheumatologist to decide what options are available. I hope you find relief soon. Sending my very best wishes for healing.

I recently had to stop taking Prolia due to development of MRONJ. Fosamax would not work for me because of the MRONJ, but my Doctor has recommended tymlos as an alternative treatment for osteoporosis. If tymlos doesn't work, I am also going to review the option of Evista which is an estrogen treatment. Take care!

Hi,
I am 79 and stopped Prolia after 2 shots. My Dr. is chairman of the endocrinology clinic at Walter Reed National Medical Center in Bethesda (also former chairman of the National Endocrinology Socity). I told him I wanted to stop after 2 shots as the side effects were terrible (as I have described previously on this site). I am now pain free and can live a normal life and walk 2-4 miles a day and feel great. If your body is telling you that what you are doing or taking, stop. Good luck! Be your own advocate.