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Support For Those Quitting Prolia

Osteoporosis & Bone Health | Last Active: 1 day ago | Replies (152)

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@jheieck

Hello, I stumbled upon this post because I am extremely interested in how to get off Prolia or transition to another drug, as everything I have been reading is pointing me to catch 22 situation, in which I cannot go off Prolia and I cannot safely stay on this drug. I never was advised prior to starting on Prolia about risks involving extensive dental work, and when I went on it 6 years ago I had 19 crowns, one bridge and three root canals, with possible extractions in my future. Yet I was put on Prolia, and it wasn't until about 2 years later that I realized the trouble I was in, as my bridge broke and I had to have it replaced. About a year ago the tooth that anchored the bridge broke completely, so I had to have an extraction and a bone graft. I worked with my bone health specialist to try to accurately time getting two implants installed, but two weeks after they were installed, the bone around one of the implants started to erode and I exhibited the beginning signs of ONJ, so my oral surgeon opted to remove both of them to be safe. I got caught in-between the recommendations of the oral surgeon and the bone house specialist, in terms of when it was safe to have the dental work done, and against my oral surgeons recommendations, I went ahead and had my my last Prolia shot in June and the dental work done in October. Since then I've
learned that I should have waited one more month (5 months out) at least before having the dental work done. I'm now back at square one waiting... I should preface all this information by explaining I don't have my T-scores, but I started at -3.0 at least, and have made some improvements. I'm in the negative 2s now. Also, I have never had one break in my life and I have fallen multiple times before and after starting Prolia... on my wrists, ankles, knees... all kinds of problems and never had a fracture. I also have severe osteoarthritis and I have been told that arthritis of the lower back can skew bone density test scores, so I wonder if my osteoporosis is as severe as test scores indicate. I also strongly believe that as a result of taking Prolia I have many side effects, including higher bad cholesterol, the beginnings of high blood pressure, incredibly painful lower back pain, and excruciating bone aches that are unexplainable. I desperately want off this medicine, but I don't know what to transition to and am basically afraid of all my options. Reclast is out because of the ONJ potential, and the bisphosphonate option, HRT, also sounds bad, in terms of side effects. I'm currently waiting to see an endocrinologist and a rheumatologist to sort through this dilemma and figure out the best options for transitioning off Prolia. I'm also due for my next Prolia shot the end of December, but I don't see any of these doctors until January/ February time frame. I'm not sure if I'm going to have to finish one more Prolia shot, but I need to find a way out of this rabbit hole so that I can get my dental work done and eventually get off Prolia for good. Besides, how many more years can I take it safely?

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Replies to "Hello, I stumbled upon this post because I am extremely interested in how to get off..."

So sorry for what you have gone through. I believe Reclast is the only suggested transitional medication used in my MD practice. One poster on this forum posted something about Evenity after Prolia so you could ask about that, but you have done 6 years of Prolia now so from what my doctors say (see also keth McCormick's "Great Bones" book) Reclast is the strongest med to counteract Prolia rebound. Maybe one would be enough to "Lock in" gains and avoid a drop in bone density-? Ask your doctor.

I hope you can avoid another Prolia shot and do Reclast. McCormick suggests using CTX blood testing to time the Reclast properly. You really might benefit from reading his book or at least that section.

It would be helpful for you to know your actual DEXA scores. Sounds like you might be in osteopenia now.

Falls seem to threaten hips but in my experience spinal fractures are often from bending, twisting, lifting, opening windows and eventually even coughing! For now it seems you are out of the danger zone.

Maybe you could do one Reclast and then some Evenity to get off the Prolia though your DEXA scores now may result in insurance denial. Your doctor would have to explain the need to transition off Prolia and yet avoid further risk of ONJ. I hope your doctor can help you get out of this situation.