What to do when denosumab course ends?

[Singingforever]

I have been on denosumab injections since July 2019, so the injection that I am to have next month will probably be my last. During this time I have not had a Dexa scan at all.

I am under "shared care" between my GP and the hospital, which is in practice a complete joke, as I have to dairy it, order in the drug from the pharmacy, book a blood test and tell the nurse what she needs to write on the form, check that the blood results have been looked at and book a date for the injection. It is a good job I have not yet lost my marbles - the surgery does nothing!

I am keen to know what happens next - I understand that doing nothing is not an option. I have tried bisphospinates with awful side effects, and I was wondering what others have done when they have come of the Denosumab. Any thoughts gratefully received.

[Met00]

I can't take bisphosphonates and was told if I took denosumab it would have to be for life. If you do stop it, it's usual to relay onto either Alendronic Acid tablets or Zoledronic Acid infusions, both of which are bisphosphonates.

[Singingforever in reply to Met00]

I was told I could only have denosumab for 5 years and then need to move onto something else.

[Met00 in reply to Singingforever]

On the ROS website it says you should have a treatment review after 5 years, but may stay on it for another 5 years (theros.org.uk/information-a.... It was the rheumatologist at our local hospital who told me if I started it I would need to stay on it for life. Unless they come up with an alternative relay drug to bisphosphonates, it sounds like you may have to do the same. Don't forget, if they offer you romosozumab instead, that's only for a year, and then you also have to go onto a bisphosphonate!

[Singingforever]

That is really useful info. I will ask for a review after my October Denosumab.

[agingfeminist]

I have been told I am on denusomab for life...you will have to take something for life....and as long as you have no probs with denusomab you can stick with that.

[scd2211]

The length of time we’re having the Denosumab injections may depend on the severity of our osteoporosis. The plan for me (determined by the rheumatologist) is that I I’ve had my first of a three year course of six Denosumab injections, after which I will have a single Zoledronate infusion to lock in bone density and prevent rebound fractures. I will be about 4 years between DEXA scans.

[nynyny in reply to scd2211]

My plan is basically the same depending on how well the Reclast infusion works.

[Sunseaandsand]

There are other options available other than bisphosphonates.

Age and if you have had any previous fractures can play a big part in what you are offered.

The hospital will be able to help with your choices.

Have you fractured previously??

If so they may offer Teraparatide then put you back on Denosumab.

Also Romozumab is the newest treatment which if you are eligible you would have for a year and then would follow on again with Denosumab.

As others have also mentioned you could possibly continue with Denosumab for the rest of your life.

If you tolerate it well then you may decide to stay with it.

You seem to be in a good place and are aware that you need to follow on with something else if stopping it.

All the best for the future x

[Singingforever]

Thank you for the helpful replies.

I am wondering if I misunderstood the instructions in that they might have been saying I would not have a DEXA until 5 years of treatment have happened, but that, depending on the results, I might be able to continue with it.

I have had fractures, including a rib from coughing, so things ae not good and I do need to be on treatment.

I will talk to the medics after I have had the 10th injection.

[walk21]

5 years ago Denosumab was only licensed for 5 years. It has since been licensed for 10, so after a review you should be ok for another 10 years. It would be good if you had a DEXA scan which told you you had improved Best wishes

[Mavary]

Hi Singing forever. I’ve been Told I’m on Denosumab for life. Mind you I am 80 years old. I think you probably need another Dexa scan to see if your bones have improved enough to maintain with vitaminD and calcium but I’ve always understood if you come off Denosumab you’ve got to go on bisophonates. Maybe not all of them cause trouble. I had one adcal and the next day I was violently sick I don’t think it suits a lot of people. Perhaps ask the ROS. Or Osteoporosis society. .

[nottowell]

Hi why are you stopping your injections. Is there a time limit. I have been on the injections for many years and no has mentioned stopping them .i have not had a Dexa scan either i should have had one a long time ago. I also have to go through the same rigmarole as you it puts me off having the jab. I even ask the phlebotomist if vitamin D is asked for a they usually forget that i can't take the tablets so am stuck really

[MayGodBlessYou]

bisphosphonate is the only thing that can follow prolia for a rest from prolia, and there's a range of bisphosphonates. after bisphosphonates you could change to something else, or prolia again.

prolia can't be safely stopped to be followed by teriparatide.

stopping prolia to be followed with evenity can also have issues with bone loss associated with stopping prolia

best wishes with it all