Prolia

[Purplegloss]

I have just received an email from my GP who has arranged for a F2F appointment to see me beginning January to discuss me starting to take Prolia. My last Dexascan in 2021 did show that I have osteoporosis, and I did take Alendronic Acid for the first two years of having Polymyalgia. Since then I have been regularly taking Vitamin D and K2 tablets, and am not keen to take AA again. When I had my Hospital appointment for the injections in November last month, which I discussed in a previous email, the Dr discussed my dexascan with me, and said it would be fine to leave it for three years, and I planned to arrange one in the spring/24 using the same Hospital where I had the last one. I don't think I have ever seen Prolia mentioned on this site, so any opinions on using it would be very helpful. Thanks.

[DorsetLady PMRGCAuk volunteer]

It is often mentioned on here -and now you have asked you can see related posts.

No experience myself so will leave others who have to reply -but always worth looking at ROS site -

theros.org.uk

[PMRpro Ambassador in reply to DorsetLady]

what did you mean for the first sentence?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Have amended,,,

[PMRpro Ambassador in reply to DorsetLady]

Mind boggles how autocorrect got that ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Very true…. 🙈 between that and HU’s foibles it’s dashed hard work some days….

[piglette]

Prolia has been mentioned in the past on this board but it does seem to have disappeared from discussions recently. It is a monoclonal antibody type drug.

[PMRpro Ambassador]

It has been mentioned because I have written about it - not always as Prolia. the substance name is denosumab. It is used less than some other bone drugs as it tends to be kept for use when bone density has become quite low.

It increases bone density very efficiently but you either have to continue taking it (or more accurately, be given it, as it is 6 monthly injections) once you have started or switch to an oral bisphosphonate if you stop to avoid a rebound loss of bone density which may lead to spinal fractures.

[powerwalk in reply to PMRpro]

Pro, this is one of the things that had been bothering me, i have recently just slipped into osteoporosis, -2.7 in lumbar at worst. Rheumy wants me to start Prolia, i feel its a bit of a leap to go straight into that as opposed to an infusion. Am i wrong??

[PMRpro Ambassador in reply to powerwalk]

Much the same sort of longer term effect. I would class them as fairly much the same - others mightn't.

Why not call the ROS helpline, someone will talk you through it.

theros.org.uk/

[powerwalk in reply to PMRpro]

Thanks Pro, i will definitely look more into it before i do anything.

[Karenjaninaz in reply to PMRpro]

My endo said if Prolia is stopped then she would give Reclast.

[PMRpro Ambassador in reply to Karenjaninaz]

Otherwise known here in Europe and the UK as zolendronic acid, a bisphosphonate.

[Karenjaninaz in reply to PMRpro]

She indicated, to me, that it was also a bisphosphonate

[agingfeminist]

Hi, I am one of the people on here who has 6 montly shots of Prolia. I began them 4 years ago and have not had any problems. If you stop taking Prolia you have to switch to taking biphosphanates. I am not sure there is much to choose between them...if you can't tolerate one then you can switch to the other.

[kewl1]

My wife has been on Prolia for about 8 or 9 years and it has worked so well for her that her specialist said she is the "Poster Child" for the drug. She gets a shot every 6 months

[Nextoneplease in reply to kewl1]

Likewise 😊I’ve been on Prolia for10 year and my bone density has increased significantly

[Purplegloss]

All comments on Prolia sound pretty positive, so thanks for all your input everyone. I plan to wait until after I have my next Dexascan, and then compare it with my previous one before I decide which way to go. When I stopped the Alendronate acid and Adcal ( I stopped Adcal because of the dreadful sickness and diarrhoea it gave me) I started taking Vitamin D , K2 and having yoghurt and a glass of whole milk daily, so hopefully that will have helped.

[Viveka]

My mum was put on prolia because she was previously on a zoleonic acid infusion having been unable to tolerate AA and it is far cheaper for the district nurse to provide than going to hospital for ZA. She was on it for years from her mid to late nineties. It was absolutely fine for her.

However I was also put on prolia when I started steroids, with no dexa scan. Fortunately I found out about the pitfalls on this site and only had one injection. As Pro said, you can't stop taking prolia without going onto another bone medication. It basically stops working and seems to reverse the bone density it produced unless continually topped up. My GP did not know this. Does yours?

So in my view, for what it's worth, prolia is ok for people with severe osteoporosis who don't mind being on meds ad infinitum but questionable for people who don't fall in that category. Personally if I had to have something, I'd go for ZA infusions to maintain bone density. Prolia would be last resport. Anyway, your dexa will help inform your decision.

[PMRpro Ambassador in reply to Viveka]

You can have Prolia to get a low bone density up to a good level and THEN switch to a bisphosphonate like zolendronic acid to maintain the better level. It will increase bone density better than most other options.

[Purplegloss]

That is very interesting Viveka, always good to get as many facts as possible. Where are the injections done on the body?

[PMRpro Ambassador in reply to Purplegloss]

Usually into belly fat since most of us have plenty! They even did it into my husband's abdomen and he was a right skinny rat!