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Prolia discontinuation

Osteoporosis & Bone Health | Last Active: 8 hours ago | Replies (144)

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@burrells5

Unfortunately, there is no safe way except a strong bisphosphonate like Reclast. I had no side effects from Prolia but my dr left and it was time for my injection. I had to find a new dr and deal with insurance. 4 mo later I started having vertebral fractures. I ended up with 6 and had vertebroplasty. It has been the most painful thing I have ever experienced. I will never be able to do some of the things I used to do. It has totally altered my life. I was given another injection as soon as the dr realized what was happening. I was shuffled from dr to dr and finally sent to an "OP" specialist. She started me on Tymlos because my dexa had got so bad from the Prolia rebound. I had been doing tons of reading and research and asked what happens in a few months when the Prolia runs out again. I was told would be ok. I didn't think it would be so my PCP got me in with a huge OP clinic in a major city (3rs one way) . I was told the same thing even though I tried to argue what my research had found. Unfortunately, I was correct and 3 mo after the prolia ran out and I would have had another injection if I had planned to stay on it, I had 2 more fractures. I went to another dr in same clinic and they realized "OOPS" . Their words were "You are in a hole that now we have to dig you out of". I had CTX tests done and still do every 2 mo. It was very high meaning I was having the Prolia rebound. They did a Reclast infusion, which now they realize should have been done before the Tymlos. It brought my ctx down. That was 7 mo ago and if my ctx goes up I will have another infusion. The prolia rebound can last up to 2 years. I hope none of this happens to you. I was only 56 when this started. I have worked extremely hard to get some of my life back. I don't know why drs can't all be on the same page and be educated in the research and all the medicines for OP. I also have had multiple phone visits with Dr Keith McCormick. I would advise you to read up on him and if you feel like it schedule an appt with him. He has been a wonderful resource. Good luck

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Replies to "Unfortunately, there is no safe way except a strong bisphosphonate like Reclast. I had no side..."

I’m so sorry to read about your issues with Prolia. I think once we’re diagnosed with osteoporosis/ osteopenia there’s no return.
I was put on Reclast, and was having my infusion religiously every year, for 4 or 5 years.
I slipped on my carpet at home, had 3 fractured ribs, that took forever to heal. So now I have teeth problems, where 3 need to be pulled. Again I’ve been visiting my Periodontist and dentist every 3 months, switching between both.
Perio sent me to dentist, dentist who would not touch me because of Reclast, recommended I go to surgeon, to get a 3rd opinion.
Surgeon checked the molars, stated they were not loose, not good idea to pull, to wait until they are ready to come out. Again all of this misery because of Reclast.
He prescribed a Rinse that seems to work so far.
But everyone on Reclast should weigh the pros and cons when it comes to dental work.
Just my experience with it 😢