Flare following Prolia?

[Mrsd12f]

Good morning, everyone! I wonder if anyone else has had problems following a denosumab (Prolia) injection. I was first diagnosed with PMR in 2015, and at that point, was told to discontinue the alendronic acid that I had been on for many years because it had been discovered it was not the “wonder drug” that had been thought.

Last September, I was advised to have a course of denosumab, and although I was very wary of doing so, agreed to it, as I was concerned about the effects of pred on my long-term osteoporosis. I had some of the predicted side effects - muscle and joint aches - but as I’d also had the Covid booster and ‘ flu jabs within a few weeks of each other, I couldn’t pinpoint Prolia as the cause. I had the second infusion in March and since then, have had problems with increased hip and back pain, which is not resolving. As a result, I went to my GP, primarily about my DEXA scan results, but also, querying whether the side effects of Prolia should last this long and whether he thought it might have triggered a flare. He admitted that he wasn’t sure, but has written to Rheumatology on my behalf and suggested I ask the forum if anyone else has experienced this. Bloods were also done but CRP was “normal”, though as I had already increased the pred, myself, that’s not much of an indicator, as we know.

Prior to this, I had finally managed to get down to 2.5mg of Pred., but with great reluctance, have now increased, initially to 8mg, but hoping to come back to below 5mg, before too long. I suspect Pro’s dripping tap may be partly to blame (definitely needs a new washer!) and maybe 2.5mg was too low, but I strongly suspect that Prolia is the culprit.

Long story short: does anyone else have experience of this?

[PMRpro Ambassador]

It isn't something I've heard people mention before. My husband complained of aches after Prolia but there was so much else going on you couldn't say that was what it was.

[Mrsd12f in reply to PMRpro]

It’s so difficult to know what’s causing what, between the osteoporosis , which until now, has been more of a worry in the background, Sjögren’s (ditto) though it definitely feels like PMR. There is, as the GP kindly pointed out, age and wear and tear to take into account. I might toddle over to Bone Health, though it’s the PMR link (or not) that interests me. Thanks for replying, Pro. I suspect lack of response to my query suggests that no one else has experienced this and I may be making a spurious connection.

[PMRpro Ambassador in reply to Mrsd12f]

I doubt you are making an entirely spurious connection - I'm very sceptical about coincidence!

No responses may be due to the fact HU is messing about again - DL and I haven't had any notifications for hours, no notifications immediately reduces the number of responses as people don't come on the site. Give it time!

Osteoporosis itself isn't painful - until you develop fractures. Sjoegrens can cause similar discomfort to PMR but if it didn't before - why now?

Have you looked at the ROS site? They have an excellent helpline to answer questions,

theros.org.uk/

[agingfeminist]

I have been having Prolia shots over the past 2 and a half years (since PME/GCA diagnosis) and haven't had any problems. Doesn't mean much...everyone is different. Good luck on your PMR journey!

[Mrsd12f in reply to agingfeminist]

Thank you for replying. 😊

[Hidden]

I’ve not had problems with Prolia. It is difficult to distinguish cause of various aches when you have multiple issues. I hope you get some answers. My best.

[Mrsd12f in reply to Hidden]

Thank you. You’re right, it is difficult to distinguish between the various pains.

[Sharitone]

Like everyone else, I have had no obvious problems with Prolia, but I maybe wouldn't notice. However, I did notice extra fatigue after Pfizer vaccines, so if it's there, and it's happened twice, then probably you are right to be suspicious, particularly if your symptoms are listed as known side effects of the drug.

[Jayge]

Never had any problems with Prolia nor has husband. Both on it several years.

[Mrsd12f]

Thank you to all who have replied; it’s much appreciated. ☺️