denosumab (Prolia/Pred

[Den73]

Hi allI went for my bone scan last week and unfortunately osteoporosis has been diagnosed.

My GP has suggested the injection denosumab (Prolia,) injection every 6 months, I have done some research on this treatment, possible side effects a bit scary. Also Prolia interacts with Pred according to the article I read with some unpleasant side effects, i am still on 12.5mg Pred, still decreasing meant to be having the injection on 27 September, have to build up my calcium and vit D first, having a blood test in 4 weeks.

Has anyone in the group had this treatment?

I really am not too keen, very mixed feelings.

Speaks about jaw problems and a host of other things, more importantly the interaction with Pred.

Very grateful for you replies. Den x

[DorsetLady PMRGCAuk volunteer]

There are some on here who are on Prolia - but don’t think it’s usually the first choice.

If you haven’t already done so, can I suggest you look at the ROS site, they have loads of different videos/advice and maybe contact one of their nurses on the help line…they are very good..

theros.org.uk/information-a...

Just for interest, what are your readings from the DEXA scan.

[Den73 in reply to DorsetLady]

Hi DorsetLady thank you so much will go on the site, didnt know about it. X

[Den73 in reply to DorsetLady]

Thank you DorsetLady for pointing me to the ROS site, very helpful advice sound knowledge that they have on their fact sheet, so everything in the mix I will decide one way or the other🤦🏼x

[Sophiestree]

Do you know what your Dexa scan results were? Prolia is usually for very severe cases with spinal fractures so I'm surprised they have suggested that at the start. Take your time before embarking on Prolia because once started you can't stop!

[Den73 in reply to Sophiestree]

Hi Sophiestree thank you for your reply.I have had a look at the report it confirms

'osteoporosis goes on to show site lowest BDM - has a T-Score Less than -2.5'

I did have a compression Vertebrae fracture of T6 vertebrae, hence the Dexa scan.

9

The report goes on to say my right hip is oesteopnia, I have had hip replacement on left hip 2 years ago. The report suggested going onto stronger treatment and to continue vit D and calcium.

I have no experience on osteoporosis, when I had the hip replacement no mention of osteoporosis was made, I was told it was osteoarthritis.

Thank you for your valued advice, ireally am not keen on such strong drugs. Den x

[Sophiestree in reply to Den73]

Even stranger they have suggested Prolia? My results are -3.9 and I wouldn't consider a drug like that.. Like PMRPro I have had three Zoledronic acid infusions yearly as I could not get on with Alendronic Acid which is their usual first port of call.

Obviously a compression fracture is concerning but I would still want a bit more info and reasoning.

Do you take K2 and Zinc with your Vit D and is the dose of Vit D high enough?

[Den73 in reply to Sophiestree]

No I dont take K2 I do take Zinc, I will take K2 GP prescribed higher dose Vit D3 which is better than I was taking.

I was on Zoledronic acid but also didnt agree with me, I suffer bad reflux and these just made it worse, so stopped

I think I am going to consider Zoledronic acid infusions yearly as i just checked it doest coflict with preds, are you still taking it?

Do you still have to have blood tests with it?

Have you had a scan again since being on Zoledronic acid infusions.

I have had so many incidents this past year where drugs are just prescribed without much thought on doctors part, so very wary now.

Thank you for your help much appreciated! Den x

[PMRpro Ambassador in reply to Den73]

The Prolia will build bone density and stabilise the bone faster than ZA - the effect is seen in a week with Prolia, a couple of months with ZA and oral options are much longer. Prolia must be taken ongoing or you swap back to an oral bisphosphonate or ZA for a time to stablise the bone density gains, If you stop Prolia without doing that, there can be a rebound loss of bone density, especially in the spine, which results in spinal fractures,

Prolia is a monoclonal antibody - has an effect on the immune system so in theory the addition of pred will increase the possibility of infections,

Prolia was mentioned for me but I chose the annual ZA infusions but I'm not entirely convinced about the possible spinal fracture and my bone density is fine. The question for me is more the quality of the bone I'm forming. Whatever - apart from some short term atrial tachycardia I also had about 3 weeks of feeling very fluey - not the 2-3 days I was warned about. It wasn't the end of the world!

[Den73 in reply to PMRpro]

Hi thank you for that information, with our 'maladies' and the drugs we receive we realise we going to get side effects from them, but if they dont stay too long.I think I am leaning towards the infusion because of the pred and every now and then I have to increase mainly due to GCA, So that will just be an extra worry for me, but I will think about it look at all the advice I can find and then by next week just have a chat with my GP.

Do you also have to have bloods taken before they start the infusion?

Thank you all so very much, quite the learning curve!

And the worst part I am feeling so well at the moment, apart from fatigue, so very reluctant to go start something up! Den x

[PMRpro Ambassador in reply to Den73]

I think I did - your calcium and vit D levels must be OK and you will need calcium and vit D supplements anyway if you don;t already take them to keep them there.

[Rose54]

Hi

I went on Prola this year one injection so far no side effects

This was due to having compound fractures of the spine after a fall .And problems with Kidneys

I did go on Aldronjic ACid for 5 years before having a 2 year break

Please excuse the spelling

[Den73 in reply to Rose54]

Hi Rose 54, thank you for sharing your experience with Prolia. I am going to have good think about it and make a decision, I know have to go either one or the other. Den x

[Rose54 in reply to Den73]

Good luck

[Den73 in reply to Rose54]

Thank you for your good wishes, have a lot to think about, it will work out on the end thanks to all the advice and encouragement I have received

[powerwalk]

My rheumy prescribed Prolia for me when i was just slightly kicked into osteoporosis a few months ago. I thought it was a bit much, i just couldnt go there unless i really had to. I spent the last 8 years on pred dreading that this would happen!! Anyway two days ago i got the zolendronic infusion , thought it might be lesser of two evils. I have had two back surgeries in the last year so was very keen to try not end up with vertebre fractures if it can be helped. Yes so far bad flu pains all over but hopefully only for few days. We can only do our best with these meds. Sometimes they are necessary as much as we dont want them. Good luck.

[Den73 in reply to powerwalk]

Thank you powerwalk for your encouragement, the pain of the spine fracture, and I have only had one! Was unbelievable as I really didn't fathom what was happening. Yes unfortunately finding out only to quick that drugs have good and bad, and sometimes we just have to close our eyes after some investigation and do it if wme have at least some answers, just dont want to make matters worse. So lots to think about iver the weekend and then make my decision.

Thank you for taking the time to share your thoughts. Den x

[powerwalk in reply to Den73]

Best of luck with it.

[Den73 in reply to powerwalk]

Thank you x

[Louisa1840 in reply to powerwalk]

I do so agree with you Powerwalk! None of us wanted to be on Pred! The first time I had an Aclasta infusion (I think that's the same as zoledronic acid?) I was ill the next day with flu -like shivering but after subsequent ones, I had no reaction for the next four years. Apparently, you can only have the infusions for five years. I am now on Prolia and have had no reaction at all. Hopefully my bones are now healthy and strong?

[powerwalk in reply to Louisa1840]

Yes think its the same thing. Yes i remember you saying about the prolia. Its good you are ok on it. Joys of it all. X

[Louisa1840]

Hi Den, I have had two Prolia injections so far for my osteoporosis. I have had no after or side effects at all. Before that I had yearly Aclasta infusions but you can only have those for five years. No one has suggested there may be a bad interaction with pred. However, I am only on 3 and a half mgs now. We are all different but it may be that you too have no side effects? My doctor said she sees too many unnecessary fractures and the horror of breaking a hip say would be too much to bear.

Wishing you all the very best and that you will make the right decision.

[Den73 in reply to Louisa1840]

Thank you Louisa for thst valuable advice. Have to say the fear of fracturung or as youbsay breaking a hip is almost unthinkable.

It does seem that the ones on Prolia have had little to no side effects....yes I can see I have to really look at the big picture here.

Thank you for your hood wishes Den x

[PMRpro Ambassador in reply to Den73]

I have had nothing unbearable with the ZA and it didn't last. I think you possibly need to think which is more effective on pred - and whether you want to stay on Prolia for life or start with 3 infusions of ZA over a period of 2 years.

[Den73 in reply to PMRpro]

Thank you very much for that piece of advice, I was already leaning towards ZA because of the Pred, and its good to hear that the side effects are bearable, ZA definitely sounds the more balanced option, especially as my T score is -2.5 I will have a chat with my GP, I feel happier with that choice. Have a great weekend. Den xx

[Nannie-C]

did your Dr discuss an exit plan and suitable relay drug for when you would stop Prolia? This is strongly advised by manufactures due to the rebound phenomenon that occurs when anyone stops/delays Prolia irrespective of number of doses.

Relay bisphosphonates are required to slow the rapid loss of density, back to pre treatment levels or lower, occurring at that time with its real risk of spontaneous multiple vertebral fractures, more so if history of previous fractures.

As antiresorptives like Prolia and bisphosphonates stop osteoclast activity old bone is not discarded as normal and builds up increasing density but it’s not new strong bone sadly only old bone.

Prolia prescribing information discusses this fully.

[Den73 in reply to Nannie-C]

Hi Nannie-CNo he didnt tell me anything about the drug told me he hasthe bone scan results back and this was thrvdfug he suggests and that I have to have a blood test 4 weeks before the injection and they will be every 6 months.

I started reading up on it and thats when I learned of the things that can happen so decided to come onto the forum to find out more.......didnt like what I read on my own and from the valuable

comments received have decided to go with KZ instead because I take Pred and with KZ itvappears yoi csn discontinue if required.

Just been getting back on track after taking Methatrexate and it was toxic for me so now I check everything!!!

Thank you for your comments. Den x

[pink123floyd]

Hi Den73 i was on denosumab for quite a number of years even tho on other meds for different health problem i had no trouble with the injection ,only ever broke 2 bones in my leg after a fall in the bedroom but felt on top of the world after each injection .hope you find that not everyone will have the same results but trying it is better than having the infusion.good luck in your future .x

[pink123floyd in reply to pink123floyd]

PS had total hystrectomy at 28 and osteoporosis by 32. Take care.

[Den73 in reply to pink123floyd]

Thanks pink123floyd for your comments, were uou on Prednesolone at the time? as the article I read said there is a interaction between pred and denosumab thats my worry as I havd GCA and take pred when I have a flare

But its good to know you had bo side effects and felt good while taking it. Just want to make sure about the Pred. Den x

[pink123floyd]

On and off preds dut to chest infection every month for 12 monthes till i change consultants and my new one gave me a lot of new drugs and inhalers so for 12 months still no side effects .good luck

[Den73 in reply to pink123floyd]

Thank you for that reassurance I will be down to 7mg and then hopefully to 7mg by the time I have the injection...so thats very encouraging info. Den x