Help and advice

[Seanfleming25]

Hi ve been prescribed steroids for 3 weeks after my GP suspected GCA. I’ve now had my scan and consultant has stated it’s unlikely. He’s told me to stop steroids immediately and I’m concerned that this is going to bring my symptoms and also be unsafe. Any thoughts would be appreciated

[DorsetLady PMRGCAuk volunteer]

Hi,

I’ve now had my scan and consultant has stated it’s unlikely..

That’s not a ringing endorsement on diagnosis, and you shouldn’t be stopping Pred cold turkey once you’ve been on it for a few weeks…

Even though it may be unpleasant if you’ve been given that advice I guess you have to follow it. He may be correct in that it’s not GCA, and one way of confirming that is to stop and see if symptoms returns. It’s a bit brutal, but at least from 15mg it’s not as bad as being much higher.

I’d step down to 10mg for a few days, then to 5mg for same time and then zero - and then see what happens.

What, if anything else, have you been told to do?

[Seanfleming25 in reply to DorsetLady]

I was prescribed 40 and tapered to 30 mgs today so will see how it goes. I really don’t feel confident

[DorsetLady PMRGCAuk volunteer in reply to Seanfleming25]

Ah right, just looked at previous post where you stated 15mg... didn't realise you had gone up to 40mg...even more reason to be cautious .

[SnazzyD]

One is supposed to be able to just stop steroids with no ill effects if you’ve been on them for less than 3 weeks if there is nothing else wrong. Your adrenal glands aren’t supposed to be noticeably suppressed after this length of time.

However, did you get a detailed report on the scan result and why they thought it wasn’t GCA? What sort of scan was it? Also, how long had you been on Pred before the scan? The longer you are, the more likely you are to get a negative result.

You had a positive result with Pred so something inflammatory is going on, so what do they think it is? I suspect they are doing what some doctors do and use the withdrawal of Pred to see if it all comes back in the absence of other clear findings. You are in a difficult position and I guess all you can do is do what they say and IF symptoms come back, you get medical attention very promptly.

[PMRpro Ambassador]

Safe enough after only 3 weeks - though any symptoms due to inflammation are likely to return, especially if what you have is PMR. And it COULD be GCA, what sort of scan was it?

[Seanfleming25 in reply to PMRpro]

Ultra sound

[PMRpro Ambassador in reply to Seanfleming25]

On which arteries? They routinely now look at temporal, brachial (armpit) and (I think) subclavian (collarbone area) as the others can show LVV (large vessel vasculitis). However - the temporal artery being OK doesn't rule out GCA, any more than a negative biopsy would. GCA isn't evenly spread through arteries and may not be affecting the bit they can look at.

[PMRpro Ambassador in reply to PMRpro]

And to add to DL's comment - if 10mg at a time feels a lot, do 5mg at a time and every week is not unreasonable if it ISN'T GCA.