GCA flare?

[pmac22]

I have (biopsy diagnosed) GCA and am currently on 15 mg of hydrocortisone, 2tabs in a one in pm.

HCTH test last month shows the adrenal gland is not functioning. I am also on Actemra inj.

yesterday afternoon my ectopic heart beats starting increasing as did pain and pressure in both temples and tenderness on scalp. Extremely tired too. Of course it is week end so can’t reach rheumatologist or endo til Monday. Is this a possible flare ? Should I increase hydrocortisone or wait it out til Monday? Thanks in advance. I had been doing pretty well and was quite disappointed with adrenal test result.

Peggy

[DorsetLady PMRGCAuk volunteer]

Might be sensible to increase over weekend just to see if that helps - you can always drop back down once you have medical advice on Monday.

[pmac22 in reply to DorsetLady]

Thank you, Any suggestions on how much to increase hydrocortisone?

[DorsetLady PMRGCAuk volunteer in reply to pmac22]

Would normally say + 5mg when on ordinary prednisone for dealing with a flare - what is equivalent with hydrocortisone?

[SnazzyD in reply to DorsetLady]

20mg Hydrocortisone to 5mg Prednisone

cks.nice.org.uk/topics/cort...

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

Cheers-,should have looked it up myself… so that low the fatigue is most likely adrenal, but the head issues? Do you think GCA? I know you had a lot more trouble with adrenals than I did, but can’t remember if you had similar to pmac22.

[SnazzyD]

Did your ACTH test show nothing at all?

Have you been having to do more or been under any stress recently? I found my ectopic beats and fatigue came in when I was doing more than my adrenals could cope with.

It can’t say for certain what your temple and scalp pains are because that can be caused by neck tension as well as GCA. If it were me and unable to access medical advice until Monday I’d increase my dose, perhaps double it or go to 20mg (HC) and see if your head issues ease. If my maths isn’t failing me, you are on the equivalent of 3.75mg Pred which isn’t much.

[pmac22 in reply to SnazzyD]

My endo just said the test showed my adrenal glands were not working and we would discuss what that means at next appointment which is in a couple week but not to go down any more on hydrocortisone and actually had me increase it by a tablet.