Hi. I haven’t posted on here for a very long time. I am now on 4mg Pred after 8 yrs of PMR / suspected GCA/ flares and better times. Have been reducing very very slowly as per all the good advice. This is the lowest dose I have ever achieved without a flare. Is it normal to feel lethargic? Not sleeping very well? I have only been on this dose for four days and know it takes a week or two for body and brain to adjust.
How can you know if your adrenal glands are functioning and producing cortisol? Can it only be determined with specific test?
I have had to change my doctors practice so they don’t really know my journey with this over the past 8 years.
Any advice would be really appreciated.
Written by
wendyanne49
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There isn't really a test for whether your adrenal glands are working - just whether they are capable of working when stimulated. Checking the basal cortisol (the cortisol level some time after 8am after no pred in the previous 24 hours) is a basic indicator on the basis f where it lies in the normal range. Very low suggests adrenal insufficiency, upper normal range suggests almost certainly not and in the middle is equivocal and requires further testing:
So you could ask your GP if they will do a basal cortisol level as described above - they can do that using a simple blood sample taken in the morning, timing isn't very crucial. If it is in the middle of the range they could request a synacthen test though you would be even better waiting to see if you get to 3mg. If it is low, you probably need a referral to an endocrinologist for advice about what to do in an emergency to avoid an adrenal crisis unless you currently have a very good GP. Otherwise - it is a case of seeing how you are. If the fatigue resolves, the adrenal glands are at least responsive to the change in pred dose. If it doesn't, it may be more of a concern,
Yes, you ask for a Synacthen test preferably, if you meet resistance ask for a 9am cortisol test. Do not be put off. Your new GP should have all your medical records if not they should request them immediately. It is standard practice to pass on those records. Sometimes they are up to speed with web records, but if like me, you are the the wrong age, the back records are still on paper.
Take it slowly and try to drop at 1/2 mg at a time and only when you feel you can - me I would sit it out and wait for that test.
I certainly had bouts of awful fatigue from about 5mgm. They were definitely linked to my activity levels, I had to be very careful about pacing myself. Over the weeks and months they decreased as I continued to taper, I'm now 3.5/3.0 . I do think my adrenals are fluttering back into life but I'm still very careful & very slow with the taper. My gp wants me to stay at 2mgm for about a year (hoping I get to 2!) , fine by me.
It’s two months since you posted but I saw it only now. It gave me hope I would be able to reduce after nearly four years. The consultant is very negative. Thank you for posting
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