Steroid Injection : Hi All, I'm feeling very... - PMRGCAuk

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Steroid Injection

Soinoi profile image
14 Replies

Hi All, I'm feeling very confused after my last Rheumatology appointment. I first saw the Rheumatologist in February and was diagnosed Sjorgen's and possible PMR. I was put on 15mg prednisolone and had managed to taper to 13mg. I saw a different rheumatologist at my appt this week who threw me a complete curve ball by saying that she didn't think I'd got either of those things but something else entirely - where the connective muscles become inflamed due to stress or an infection. I was so taken aback that I can't remember its proper name but related to psoriasis I think. She said I should stop oral steroids immediately and gave me a 120mg steroid injection in the hope that my body would reset itself with a bigger one shot dose. I realise it's only four days since I had the injection but my pain levels have slightly but noticeably increased and I'm concerned. Has anyone been through similar or had experience with steroid injections they can share? Thank you in advance. Still trying to process it all! 😏

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Soinoi
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14 Replies
SheffieldJane profile image
SheffieldJane

I wonder if they thought it was Psoriatic Arthritis that can present in a similar way to PMR? I have not had a steroid injection, but my Rheumatologist considered it for a swollen arthritic knee. I would feel confused too. Can you see the previous Rheumatologist?

I am unable to help about the injection, hopefully someone will be along soon.

Soinoi profile image
Soinoi in reply to SheffieldJane

It wasn't arthritis but something 'inter...???' I guess it will be revealed in f/up letter. I could see previous rheumatologist but hard to know which one to believe 💁‍♀️

SheffieldJane profile image
SheffieldJane in reply to Soinoi

The key thing is, did Pred relieve your initial symptoms? That is a diagnostic indicator.

Soinoi profile image
Soinoi in reply to SheffieldJane

Yes, it did help; but I assume now that I can't take oral steroids for a few weeks after a 120mg injection.

SheffieldJane profile image
SheffieldJane in reply to Soinoi

The previous Rheumatologist would be able to advise on the large Pred dose and when you could return to PMR treatment, if that is what you decide. People with GCA have large doses, initially. I imagine that you feel strange but it will wear off in a few days. You need medical advice though.

Soinoi profile image
Soinoi in reply to SheffieldJane

Yes, thank you. I've left a message on the Rheumatology helpline so, hopefully, will speak to one of the nurses next week & go from there.

PMRpro profile image
PMRproAmbassador in reply to Soinoi

The point is to replace the oral pred with a dose that tapers itself over about 4 weeks - you shouldn't NEED the oral pred but you probably have about 3 weeks until you notice it wearing off. When the injections are used to manage PMR they would repeat it, She is presumably using it to get you off pred?

PMRpro profile image
PMRproAmbassador

What a strange concept - to me at least. I really can't see why symptoms would INCREASE after a depot-medrone injection - they can be used to manage PMR.

"where the connective muscles become inflamed due to stress or an infection" - arguably, that could describe what happens in PMR but I'm not a rheumy. I wonder if she means a reactive arthritis - thought not sure that is related to psoriasis,

It all seems a bit mixed up, I would have wanted a far clearer argumentation and it wasn't very professional to chuck out her colleague's diagnosis without explaining why she thought so.

Hum. Not sure what to suggest - though I think I would contact PALS at the hospital and ask for some clarification from a third party.

Soinoi profile image
Soinoi in reply to PMRpro

I did wonder if it was because the steroid from the injection took time to enter the system but I don't know. I'm also concerned (& in the moment forgot to ask) what will happen in terms of adrenal function once injection starts to wear off and after nearly 3 months of oral steroids prior to having it.

PMRpro profile image
PMRproAmbassador in reply to Soinoi

Three months isn't too horrendous but it won't wake up overnight, The injection releases steroid over a period of about a month, always less and less day by day. Has she stopped your pred with immediate effect? I think you will not only feel whatever it is you have returning as the dose falls but you will also probably start to feel the adrenal function effect. It MIGHT be slowly enough in that month for it not to be too bad but be aware and if you start to show ANY signs of adrenal insufficiency: confusion, weakness, diarrhoea, nausea etc, then have no hesitation in calling 999 and explaining the situation. Long before that, make sure you have seen your GP and discussed it with them, as I said - I would feel it was unacceptable but you are the poor sod in the middle!

Pixix profile image
Pixix

yes, I’ve had many steroid injections, some worked & some didn’t. Some lasted 48 hrs, some lasted 48 days! Sorry it’s not an exact answer, but I do believe in them, & I’m having a depo medrone injection next Thursday. I’ve had PMR for 4 years, & have 11 other diseases. Happy to answer any specific questions…

Soinoi profile image
Soinoi in reply to Pixix

Hi, thank you so much for sharing your experience. Can I ask if there is a delay in the injection giving pain relief... my pain has slightly increased since coming off oral steroids & having the injection; but I'm hoping it's just because the injection takes time to enter the system? Also, may I ask if you suffered any withdrawal as the effects of the injection wears off? Thank you!

Pixix profile image
Pixix in reply to Soinoi

I think people react differently. Yes, sometimes there is definitely a delay, it’s not instantaneous…that would be a miracle! Have I got worse before it takes effect? Don’t think I’ve ever thought about it enough to answer, sorry. Ive had thumbs, wrists, knees, hips, back & others injected & become very used to it. I’ve never suffered withdrawal when it ends. Hope this helps a bit.

Soinoi profile image
Soinoi in reply to Pixix

Yes, thank you... that is helpful 🙂

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