Prolia question

[Skelly10]

Good Morning All,

I'm a new member and have a few medical issues going on. First, I have Myelodysplastic Syndrome and take Revlimid to treat it. Second, I developed Osteoporosis 5 years ago, as a result of the medication. My doctor put me on Boniva first and I hurt so badly, he stopped it after the first dose. He then put me on Prolia and I did well on it. This spring, he told me that it was now reccommeded, to use only for 5 years and took me off of it. My question is: Can I go back on it after a time, or do I have to go on a different drug? Any help pr insights welcome.

[Arcadia10]

Did your doctor discuss with you the possibility of rebound vertebral fractures when discontinuing Prolia and put you onto a relay bisphosphonate? This issue became apparent in early 2017 when the medical profession realised that a large number of vertebral fractures (often multiple) were being sustained by people who had been on Prolia, then stopped having the injections. The incidence is about 10-15%.

When you say that your doctor took you off it in Spring, was that when you had your last Prolia injection or was it when the next injection was due which you then missed? It is very important that you go onto a relay bisphosphonate eg. Fosamax or Actonel ASAP if you missed your last injection. The fractures can start as soon as 3 weeks afterwards. There are a lot of people on this site whose lives have been ruined because they weren't given the correct information and right advice when discontinuing Prolia. If you did miss your last injection and you're not on a bisphosphonate at present, I urge you to contact your doctor as soon as possible to get put onto one.

I took Prolia for 2 years and have been on Actonel for 17 months to prevent the possibility of rebound fractures. The time frame is usually 24 months on the relay drug.

In reply to your question - yes, you can go back on Prolia again, but stopping and starting means that you have to go onto the relay bisphosphonate afterwards each time - and there is the risk of rebound fractures. People these days are told by their doctors before starting Prolia that they have to be on it for life. It's not straightforward to discontinue Prolia because of the requirement for the relay drug, so you really wouldn't want to stop and start again.

[jimister]

Hi, i am on Prolia and my consultant told me recently that i can now continue on Prolia indefinitely.

[Posy-White]

Hello Skelly10,

Have we misunderstood are you not taking any Osteoporosis medication at present having stopped Prolia in the spring?

I do not want to alarm you but, like Arcadia10 explained there is a possibility of rebound vertebral fractures when discontinuing Prolia.

It was suggested I stopped Prolia in June 2017 after a 5 year course for a 'break from medication'; I had done extreamly well on Prolia and dexa scan showed I was no longer in the Osteoporosis range so was not offered any other medication, just 6 monthly blood checks.

4 months after stopping Prolia I woke in the night with extream back pains, I had 8 spinal fractures - and yes like Arcadia10 said I am one of the people 'whose lives have been ruined because they weren't given the correct information and right advice' - I'm no longer able to work, I use a wheelchair when out and need help with my care, am in pain all the time, not just my life but that of my husbands have changed by what happened.

I understand that people who had been on other Osteoporosis medication prior to Prolia may have a little protection still in their systems. I'm unsure about the one injection of Boniva you had, and if that could still count.

It is thought as Jimister also says you can stay on Prolia for longer than 5 years and Consultants are suggesting 10 year / life time periods.

The ROS website has lots of information/fact sheets about the different Osteoporosis medication. You might find this helpful. I'm guessing with your MDS some Osteoporosis medication may not be as suitable as others??

Please do get support and medication the risk is not worth taking.

Good Luck in getting something sorted out quickly.

Best Wishes

Posy White

[walk21]

My consultant told me 18 months ago that Prolia had recently been licensed for 10 years