weaning off Pred

[TedTheMaineCoon]

Hi

I’m being weaned off my steroids , by direction of the rheumatologist. I was on 45mg a day after being on iv steroids for suspected GCA .

And now down 35mg a day for 7 days , then 30mg a day for 7 days and so forth . Til off them . But the last few days been getting pain in right arm , shoulder and neck - the usual pmr pain . Painful to lift arm or hold anything !

I’ve got appointment with vascular team tomorrow, they were going to do a biopsy for GCA . But not sure what their plans are . The rheumatologist is sure I haven’t got or had GCA .

Can anyone advise me about this pain ? Hope it’s not a flare up again ?Been feeling ill all year . I’ve only recently been diagnosed with PMR .

[SheffieldJane]

Just that Pred giving relief is a diagnostic pointer for PMR and GCA. Your biopsy will be more accurate on a lower dose. There is non cranial GCA which does not affect the temples but other arteries. My diagnosis of non cranial GCA was made by a specialist ultrasound scan. It appeared in my armpit. These diseases cause awful pain and stiffness. I hope you get a correct diagnosis and treatment very soon. 🌺

[TedTheMaineCoon in reply to SheffieldJane]

Thank you so much ! Interesting! I always get terrible armpit pain .

So glad I joined this forum , I’ve gained so much insight in just a few days !

Thank you lovely people on here !

Kind Regards

Lesley 😊

[DorsetLady PMRGCAuk volunteer]

If it is only one sided -then may not be PMR unless that’s how yours started… and 35mg should be enough to control it.

So either you do have GCA or there is something else causing it. Have you tried painkillers?

Obviously you will report it tomorrow.

[TedTheMaineCoon in reply to DorsetLady]

Thanks Dorset Lady

Yes do take pain relief , which helps. It did start over a year ago 1 sided . Then flare up both sides this year with temporal pain & blurred vision & now 1 sided.

Anyway will let them know At tomorrows appointment.

Lesley

[DorsetLady PMRGCAuk volunteer in reply to TedTheMaineCoon]

But of a conundrum if pain relief helps, it usually does very little for PMR nor GCA… says she having used a great deal whilst trying to get a diagnosis many moons ago.

Do hope you get some more sensible responses tomorrow, sure you’ll report back…

[TedTheMaineCoon in reply to DorsetLady]

yes will let you know about tomorrow’s outcome 👍🏼😊☹️

[PMRpro Ambassador]

Withdrawal symptoms as you reduce pred too fast and in too big steps can be VERY similar to PMR symptoms (or of anything else you are taking the pred for).

35mg should be controlling ANY PMR and probably a lot of GCA since the very high doses are solely to reduce the inflammation quickly because of the risk to sight,

If you were on the i,v, pulse therapy for suspected GCA it is very unlikely they will find a lot in the biopsy whether it was GCA or not.

Why is the rheumy sceptical? Is his pride hurt?