shoulder pain on tapering after GCA flare

[Golfers1]

Hi everyone, well after flare of GCA and going back up to 40 mgs pred daily I felt really well and no symptoms but now down to 30 mgs I have shoulder and biceps pain. My GP thinks that because these have not responded to the pred at such a high dose they are a separate issue. I also have a lot of cramp in hands and behind ear and again am told unrelated to GCA or PMR. How do I really know for sure?

Such a confusing condition !

[DorsetLady PMRGCAuk volunteer]

Shoulders, biceps and hands sound very PMR-ish - but 30mg should be adequate to control that, so GP may have a point. But the ear could well be GCA…

I think you need a second opinion, and sooner rather the later.

Just as a matter of interest have you tried ordinary painkillers to see if they help at all?

[Golfers1 in reply to DorsetLady]

No I haven’t but will try tonight as I am having difficulty sleeping as usually I sleep on my side and can’t do this anymore because of the pain.

[DorsetLady PMRGCAuk volunteer in reply to Golfers1]

Always worth a punt ., and I’m a side sleeper as well so know where you are coming from…

[PMRpro Ambassador]

I agree - second opinion required.

Is is cranial GCA or is it extra-cranial and affecting the subclavian and brachial arteries - that could account for the arm problems. And it is a brave person who denies those symptoms are nothing to do with GCA because they could be and the only way they could be so sure is with the right imaging showing there is nothing there but youa re on pred which makes a PET-CT unreliable.

[Golfers1]

I have cranial GCA and I did have an ultrasound of axillary and temporal arteries but they didn’t show anything as I had been on 40 mgs of pred for 3 weeks before the scan.

[PMRpro Ambassador in reply to Golfers1]

Doesn't have to be as far as the axillary artery - could be a stenosis in the subclavian, further upstream.