Prolia and its side effects.

I just had my 3rd injection with this second go round. So I started back on it in June 2023.

@neverretire Keith McCormick, in his book "Great Bones," writes that rebound is more easily handled if you do 1-3 shots (a year and a half) than if you continue.

What did your doctor tell you would happen when you have done the full course of Prolia (5 years?).

Do you see an endocrinologist? I am surprised that Prolia was suggested after a fracture getting into bed. Based on my experience with endocrinology, Tymlos, Forteo or Evenity would have been offered.

I hope you get expert help to avoid rebound and then get on one of those medications, but you have to find out if any of them will work after 3 shots of Prolia. Not saying they won't. But you need an expert on this. Of the three, Evenity might be the best possibility.

Some are transitioning from Prolia safely with Reclast. The multiple fracture rebound effect of Prolia should be monitored for two years with bone markers.
Reclast (zoledonate) has it's own set of hazards, but is the most recommended exit strategy from Prolia. You could alternately take Fosamax (alendronate) . Reclast is a yearly injection, Fosamax a daily pill.
Bone loss six months after the Prolia injection is rapid.
When are you due for another injection?
I agree with your assessment of the drug, and think that you should transition off Prolia. But you can't be shamed for trusting your physician.

The fracture happened 14 months after taking the first Prolia shot. I’ve read that if you stop Prolia you risk fractures so I thought the fracture was caused by stopping the injections.
I see an internal medicine doctor as my primary care physician. I was not given any information on Prolia; not by my doctor or the hospital that administered the drug.
I too hope for some better informative decisions.
Thank you so much for your time.

Your fracture might have been from rebound if there was no follow-up drug. Rebound means your bone density went back to what it was before the shot, or worse, and your fracture risk went up. Then again, maybe that one shot didn't address your osteoporosis and your bones continued to worsen anyway.

Primary care physicians/internists tend to prescribe bisphosphonates or Prolia because that is what insurance tells them to do, They consider these drugs "first line." For someone with a fracture, this is very misguided and insurance would cover more expensive bone builders for you since you have a fracture.

We really need an endocrinologist and a good one, and in your situation even more so because extracting yourself from Prolia is going to be complicated.

@gently I wonder if, after dealing with rebound with Reclast or Fosamax, it is possible to get on a bone builder. Evenity is so new but maybe that is possible. I don't know if doctors even know.

My friend's doctor put her on Tymlos after Prolia. Leder and McCormick both say this sequence is not effective. What is the answer for those on Prolia who want to get off, beyond addressing rebound?

@neverretire just want to add that Dr. Ben Leder in his YouTube video "Combinations and Sequencing Approaches to Osteoporosis" DOES have some good things to say about Prolia's effectiveness in increasing bone density. Dr, Keith McCormick ("Great Bones" page 546) does as well. The drawback, as both say, is the rebound if you need to get off. McCormick suggests using bone markers to time the transition to Reclast. If you could tolerate Prolia this might be the best option at this point but since you cannot tolerate Prolia, an expert endocrinologist can best guide you as to what to do.

Am I understanding correctly that Prolia is a 5 year program and then you can go off of it?

@neverretire I do not know the standard length of time. Or if there is a standard time. My friend in her 80's is taking Prolia for the rest of her life.

A poster in another forum said her doctor said 5 years. I have seen studies for 3, 4 and 8 years.

McCormick writes that studies showed that Reclast given 6 months after Prolia preserved bone density for at least two years. "However another study of women who had been on denosumab for seven years found that even with zolendrate as sequential therapy, they still suffered a substantial loss of bone. Even multiple zoledronic acid infusions may not be enough to stop the rebound if denosumab therapy is discontinued after it has been used long term." (pages 548-9

That said a chart in Great Bones shows that Prolia can bring 6-8% improvement in spine bone density in two years (Reclast brings 3-4%). Hip is at 2-3 % for all anti-resorptives including these two.

McCormick suggests doing 1-3 injections to get that benefit, if Prolia is the chosen drug, and stopping at that point so that the rebound can be handled well with Reclast. He suggests using the bone marker CTX, which measures the bone turnover rate, to decide when to do the Reclast, but other providers say to just do the Reclast at 6 months.

McCormick is just one expert, very well-versed, not a physician but a chiropractor who has dedicated himself to osteoporosis. Dr. Ben Leder , and endocrinologist at MGH, has similar info.

I know it seems like this puts you between a rock and a hard place but there is a solution and a good endo can help you find it. I am hoping that research will quickly show that Evenity is an option for those leaving Prolia, either after Prolia or after Reclast.

@neverretire I see an endocrinologist. After taking a complete history and reviewing my chart that shows a sacral fracture in 2023 the endocrinologist recommended Evenity for 12 months (I go once a month to an infusion center for two injections). My endocrinologist said that I was doing everything I could do with diet and exercise for osteoporosis but the fracture changed that for me. So, just as @windyshores posted here Evenity is often prescribed for people like me who have had a fracture.

I suggest that you ask your internal medicine/primary care provider to refer you to an endocrinologist (or rheumatologist). These specialities are well versed and trained in treating osteoporosis. I'm not thrilled with getting those Evenity injections every month but if the medication prevents future fractures I am and will be thankful that I did what was recommended.

@neverretire What will you do next?