Denosumab

[Girlguides]

Had my 3rd injection of Denosumab in September. I did have neck abd back pain with previous injections. I decided I would go with 3rd, I'm having worst pain ever. Has anybody else on this drug finding the.more injections it worsens the pain.I'm trying to cope as I know I cannot just come off this drug.

[ABwn]

Good morning Girl guides. I have had my 1st injection of denosumab last June and 2nd due in December. I was told, when having 1st injection that it doesn't stop the pain. I had compression fracture of the spine, wonderful osteoporosis!! So from that comment by the Rheumatology nurse I haven't expected any pain I was suffering from to miraculously disappear. I'm sorry, probably not what you wanted to hear. Talk to your GP, or your rheumy nurse, they may be able to advise you. Good luck.

[Girlguides in reply to ABwn]

Thank you fir replying. My fractures had heald and had very little pain.Since injections a lot of pain.

Think this us my last.

Good luck.

[Teriparatide2024]

Hi Girlguides. I just wanted to clarify: did you have the neck and back pain before your first Denosumab injection, or did these pains appear for the first time after that first injection?

[Girlguides in reply to Teriparatide2024]

Thank you fir replying.This neck and severe back pain came after started injections.

My fractures had heald and pain had gone..

So my assumption it's the Denasumab.

Take care.

[Teriparatide2024 in reply to Girlguides]

…. And then, with the second injection, the same pain came back again? But stronger?

[Girlguides in reply to Teriparatide2024]

Yes and 3rd.

[agingfeminist]

I have had 9 injections without pain. Of course, everyone is different. But you are advised to check out with doc any side effects...please do. It might affect ongoing treatment.

[Girlguides in reply to agingfeminist]

Thank you for replying to me.I will certainly take your advice and speak to my doctor.

[Posy-White]

Hello Girlguides

Sorry your having issues, it does sound as if it's connected to the injections. I have not had issues in having the Denosumab injections, but have had with some of the other meds, we are all so different!

Think agingfeminist has the right idea with going back to the doctors, if you do it now you have plenty of time to plan a change of medication. I guess you know you mustn't just stop Denosumab because of a high risk of rebound fractures. As I had 8 spinal re bound fractures I am very keen this doesn't happen to anyone else!

Wondered if talking to one of the Specialist Nurses at the ROS helpline would be helpful? They would be able to give you some general ideas if others (even if only a few) have had such issues also they'll be able to signpost you to alterative medications avaialable (or you could look at the ROS website for them). This way you go to the doctors armed with ideas on possible alternatives as you have tried for over a year on Denosumab, so given it a fair chance and clearly are not happy. If however the doctor thinks it's not to do with Denosumab then a year plus with neck and back pains in my books needs checking out!

Good luck with getting something sorted out, best wishes

Posy White

[Girlguides in reply to Posy-White]

Thank you Posy white for replying to me.It's good to hear other people's thoughts.

I will have had 18 months on the injection in March when next one is due.

I will deffinately be in touch with them so as to plan another treatment.

I am going to take your advice snd speak to OS nurse.

The nurse I see says no side affects from this injection.

I also agree what is the neck and back pain if not the injection.

I hope you are coping well. And wish you pain free.

Thank you.

[Fruitandnutcase in reply to Girlguides]

Can’t add to that but I’d just say don’t be fobbed off with your nurse saying there are no side effects from the injection. I think doctors / nurses often tell you you’re the only one or they’ve never heard of that before then you discover that’s simply not true.

If you had no pain pre Denusomab and you are having increasing pain now then you need your pain investigated. Good luck.

[Girlguides in reply to Fruitandnutcase]

Thanks for replying to me.Yes I need this beck and back pain investigating.

Are you on medication?

Hope you are free from osreoporosis pain.

[Fruitandnutcase in reply to Girlguides]

No I started alendronic acid almost five years ago but gave up after four months because I felt so ill taking it. I had constant bouts of sinusitis - a prescription for antibiotics pretty much once a month, my teeth hurt, ears hurt, my vision was blurred, it was horrible. I slept all day the day I took it then I developed bone pain in my hip which was totally new and freaked me out. Within a couple of weeks of stopping it I was back to my old self again which was a relief

I wouldn’t say I have osteoporosis pain, I’ve got inflammatory arthritis which causes muscle pain and a bit of osteoarthritis in my hips plus burstitis in one hip. Not sure any of the aches and pains I get are because of the osteoporosis.

It’s very annoying though when people say a particular medicine couldn’t possibly be the cause of your pain when the pain only started after you took it.

Whatever you do though, don’t just stop your Denusomab, that is very likely to lead to spontaneous fractures if you feel you want to stop it you will need help from your consultant to manage your change onto a different medicine.

[Girlguides in reply to Fruitandnutcase]

I was on Aledronuc Acid tablets with no side effects.My consultant decided to put me on 3 infusions one a year, had one then lost during pandemic, hence spine fractures.

I also lost 4 I ches in height.

HVe you list any height?

I will certainly be contacting consultant to put me on another medication.

Sorry about your arthritis must be very painful.

Wishing you well.

[Fruitandnutcase in reply to Girlguides]

Oh dear, how awful that you had spinal fractures because you missed an injection because of Covid. Especially as you were fine taking alendronic acid - on the plus side you know you can take alendronic without any side effects so hopefully you can either go back on tablets or have annual infusions.

Will you point out to your consultant that you had your fractures because of lack of continuity with your Denusomab / Prolia so that he doesn’t let that happen to any of his other patients? I often think from what I read on here that some doctors aren’t aware of that.

No I haven’t lost any height - long may that last but you never really know do you.

Yes, arthritis - some mornings I wonder if I will be able to walk when I stand up but by night time I’ve loosened up and I feel fine. My secret is a couple of paracetamol, a rub with something like Volterol or Green Lipped Mussel Gel, keeping moving - mostly Pilates and walking and not doing anything ridiculous.

Good luck with sorting out your next move as regards your treatment.

[Girlguides in reply to Fruitandnutcase]

Thank you and good luck to you health wise.

[Mavary]

Hi! Maybe you have another fracture. Have a word with your Dr because if it is the Denosumab it may not suit you. There is other things you can take. I’ve been on them for three or four years now and haven’t had problems like that. Yes I’ve got pain from the fractures I’ve had and I have to live with that. Your bones once broken in the spine do not heal as they were and that causes pain. I’m quite restricted by mine but since I’ve been on Denosumab I haven’t got any more fractures. I am touching wood while writing this.

[Girlguides in reply to Mavary]

Hi againI was on aladronic acid and didn't have any problems.

My consultant decided to put me on Zolendronic infusions for three years, I had one infusion then covid. I was lost in the system so hence fractures in my spine.

I have lost 4 inches in height.

Have you lost any height?

Think this could be where a.lot of pain is also from.

Hope you are coping.

[Mavary]

Hi I lost three or four inches in height. I’m a little shorty now.

[Girlguides]

I'm also a little shorty now. Can be uncomfortable.

[MaggieSylvie]

That's scary! So far I have had one injection, and no side-effects at all. I haven't had any more fractures either, and my back, while bent, feels stronger, even though pain stops me in my tracks.