Recent diagnosis of GCA

[Pieater67]

Hi,just spoke to Rheumatologist via phone this morning,he confirmed a diagnosis of GCA had been reducing prednisolone by 5mg every 5 days.Commenced at 45mg now Down to 15mg he informed me this was to quick remain on 20mg until bloods are repeated.Hope every one is keeping well.

[DorsetLady PMRGCAuk volunteer]

Well done that Rheumy- much too quick tapering.

Why were you reducing so fast - not sure of diagnosis?

You need to be very wary of flares during the first 6 months of GCA (even though you were on Pred previously for PMR) - so irrespective of bloods, no more 5mg tapers.

[Pieater67 in reply to DorsetLady]

Hi,this occurred during lockdown emailed myGP asked me to go to my local hospital for ESR to be done waited5 hrs sent to clinical decision unit various investigations requested it is here I was asked to reduce 5 mgs every 5 days The Rheumatologist said today to quick go back to 20mgs until blood results are seen then prednisolone reducing regime will be given to me

[DorsetLady PMRGCAuk volunteer in reply to Pieater67]

Ok, thanks for explanation. Please let us know outcome.

[PMRpro Ambassador in reply to Pieater67]

Hmm - hope the rheumy educates them about how to manage GCA.

[Pieater67 in reply to DorsetLady]

I was reducing this quick as the medics at the hospital advised Reduce 5mgs every 5days I cannot blame these medics as they deal with very complicated medical conditions every day.

[DorsetLady PMRGCAuk volunteer in reply to Pieater67]

And the problem is , Pred is very often given as a short term treatment for many illness - and they (the doctors) don’t understand its use in PMR or GCA.

[SheffieldJane]

Gosh, well you saw this coming a long way off, sorry though, it’s a blow. The same thing happened to me. Be prepared for your bloods to appear normal, 20 mgs can do that. I wonder what he will do next? I don’t really recognise what my Rheumatologist is doing either. Up to 40 mgs and down ( big weekly drops 5 mgs then 2.5 at my request) to 10 mgs but I have been prescribed Ro-Actemra , which I am now injecting myself with once a week. I assumed that this is expected to take over. If that is not the plan for you, it would be interesting to learn what dose you are put on to deal with GCA. Let us know if you have the time and inclination. I am wondering if a new pattern of treatment is emerging especially if your sight is not considered to be at risk. Best wishes!

[Pieater67 in reply to SheffieldJane]

Hi never saw this coming have had P MR for 4 1/2 years waiting for this dreadful condition to bog off hate it with a passion,anyway will just have to get on with it.

[SheffieldJane in reply to Pieater67]

I looked back at your last couple of posts. The symptoms did seem to be gathering. Maybe not if you are in the middle of it though. I was 4 years PMR, thinking I was almost out of the woods, on 3 mgs. I wish it would bog off too!

Yep! Keep calm and carry on to quote the cliche.