How long should I take Prolia?

I am on Letrozole, diagnosed with osteopenia. I have 6 monthly IVs of Zometa (similar to Prolia). My Onco said I should stay on it for 5 years because of my osteopenia, but the standard time is 3 years. However I see some women on this board are on it or Prolia for many years.

I plan to stay on Zometa as long as I take Letrozole (minimum 6 more years) unless there is some medical reason that I shouldnt.

Right now my endocrinologist is planning to keep me on it for 5 years. She said that you can (and should) 'lock in' the bone with a biphosphonate before you stop the injections. She said there's a protocol specific for coming off it to keep the bone density from rebounding back down so maybe ask your dr about that when you're ready to come off it.

My doc said 6 years and then a break. I'm about to take shot # 7, so I'm starting year 4.

Special, thanks for the info about Reclast coming off. I'll discuss that with my MO when I see him this fall.

Can someone post a link to the article - research indicating taking Reclast after Prolia? My oncologist does not share any information - it's like drive thru Mac Medicine in/out the door. I was on Prolia for about 5-6 years and the last July visit was told no more Prolia because my Osteopenia was 'stable'. Maybe some change in the insurance coverage dictating what they will cover? I assumed my osteopenia was stable because of the Prolia and I have the majority of the bone loss in my right hip. If I ever get a fracture I'm sure it will be the right side.

cp418 - here is some info about Reclast after Prolia, it’s in an answer by Dr Deal.

https://my.clevelandclinic.org/health/transcripts/6949_osteoporosis-get-the-facts

Additional info, look for the Denosumab section.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4472120/

I called Amgen today to get more information about how Prolia effects cholesterol. They were very helpful. A trained pharmacist took my questions and had a nurse call me back promptly. In a 3 year trial with 7800 women from 60-91 years of age - 1/2 were given Prolia and 1/2 a placebo. The numbers aren't much, but they are there. 7.2% in the Prolia group had raised cholesterol. 6/1% in the placebo group had raised cholesterol. So they are listing it as a possible side effect, but no way to know if it's more related to the drug or the age of the participants.

My HDL is fine but my LDL keeps going up. Unfortunately I expect my PCP is going to tell me to quit eating butter. It's the only thing left that could be causing the LDL increase. Actually I've given up most everything else I love, so I probably won't.

While I had them on the phone, I asked about the "new" data regarding fracture risks when stopping Prolia - either for good or for a 'drug holiday'. Yes, we should talk to our docs about another resorptive therapy if/when we quit Prolia since there is a significant bounce back factor that eventually settles at pre-treatment levels around 18 months after the last injection. There are measurable vertebral fractures - some as early as 7 months after stopping Prolia. Kind of shoots a hole in my docs original plans to lay out a year & then start over.

As for how long you can stay on Prolia, they don't offer guidelines but they do have people who have been getting Prolia shots for up to 10 years.

Interesting particularly since I am NOT ER/PR+ and have not taken tamox or als. My DEXA scan has moved from osteoporosis caused solely by chemo up to osteopenia, but I still can't imagine quitting.

edj - it's such a small percentage. I was just searching for any possible cause so I wouldn't have to blame butter.

I saw a bone endocrinologist who specializes in osteoporosis, bone drugs & esoteric things like ballet dancer's legs & runners bones. Basically he told me Prolia is now rated safe for 10 years. I just completed year 5. You should NOT miss your 6 month shot by more than a few weeks. If you contemplate a drug holiday, there isn't enough information yet to say a Reclast shot would work, although there are ongoing trials with results maybe in the next year. His recommendation was Fosamax in the interim if you have to stop Prolia, which you can now take once a week.

If you have to have dental work done on Prolia, schedule the last 4 weeks before the next shot is due (5 months). But do NOT skip a dose.

Lily - Zometa is a bisphosphonate - same as Fosamax, Reclast, Actonel or Boniva - although I believe the doses are different (maybe higher or more potent?) since it's an infusion.

My MO and Gyn recommended I start with Prolia because it is one shot every 6 months instead of an infusion, and it is a monoclonal antibody instead of a bisphosphonate. It is the same category of drug as Xgeva, but Xgeva is a higher dose & used when cancer has metastasized to the bones.

Good luck with your upcoming infusion.