I kept my twelve monthly appointment with my Consultant yesterday about my GCA.
I have been on 3mg of predisolone since having my last of three relapses. By July I had reduced to two and a half. I had done this very slowly. I was beginning to think about another half milligram reduction but have been advised against it in consideration for my adrenal glands. This was a shock for me. What thoughts has anyone on it?
I see in post you wrote about 10 months ago you said you had been advised to stay on 3mg for life…but not why or by whom.
I know you’ve been on Pred for a long time, but have you had your adrenal levels tested by anyone to ascertain if they are capable working - and do you have any signs of adrenal insufficiency. Or any signs of GCA still being active?
..but to be honest, 3mg is a very low dose, and if it’s giving you a good QOL I wouldn’t be too worried about staying on it… whether that be for your GCA or your adrenals… but I think I’d want confirmation from my medical team that I needed to be on it.
It was by my Consultant. After my second relapse she had suggested it but at that point I was not as well read as I am now about GCA and went ahead with getting off predisolone with disastrous results when it happened.
The Consultant has never suggested having my adrenals tested in all the time (almost eleven years) that I have been seeing her.
Yesterday I did ask for a Dexa scan and was told I'm too old - 85 is cut off.
Okay thanks….PMRpro has replied re basal cortisol test…. Might be worth asking - unless yiu get a similar response re age from GP. 😳
I intend to ask the GP to arrange a test. Thank you.
Talking about adrenal insufficiency what signs do I look for. At no point in the almost eleven years I've been under her has she suggested any test for this. The only thing I have been sent for is a Dexa scan and now she tells me I'm too old having passed eighty five for that.
Most common is fatigue, with maybe lightheadedness, dizziness, nausea and other digestive issues - this link gives more info-
healthunlocked.com/pmrgcauk...
But not everyone suffers to the same degree.
Many thanks for that very helpful list of things to look out for.
I think I would try - but not mess things up and have a very low threshold for stopping a taper and I would want at least a basal cortisol test to see what your adrenal function is doing.
Prof Dasgupta told us he often kept patients at 2-3mg longterm as it reduced the risk of relapse and is a low dose. As we get older the likelihood of adrenal function returning fully does fall so maybe the doctor is thinking of that and doesn't want to rock the boat when it is stable.
That could well be as my Consultant is a cautious lady. She has never offered me a basal cortisol test for my adrenal function.
Probably not aware of their use. You could ask the GP to do one - just a morning blood sample for cortisol, any time in the morning but without having taken your pred. Under 100 is definitely adrenal insufficiency, over 450 is normal and between they are recovering - because you are on pred they may well be low but it doesn't matter too much unless it doesn't improve over several months on slightly lower doses.
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