How routine are Synacthen tests for WG sufferers? - any experiences?

I have been on Prednisolone for just over 2 years and now I have tapered off them. I still feel fatigue during the day , which I thought was pretty normal for someone with WG in remission. The renal unit now want me to take a short "Synacthen test" to determine whether my adrenals are functioning as normal again. But what I am wondering is, if your adrenals are NOT functioning as they should, is there anything at all they can do about it?

I have never heard this Synacthen test mentioned on any WG forum before ( it's generally associated with Addison's disease) so I am wondering how routine it is within the NHS for the treatment of vasculitis, and what people's experiences have been. Thank you.

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  • I know of the test for adreno-cortical function, but the name is not familiar. In Addison's disease the adrenal gland stops functioning due to disease. When you take long term pred in doses over 7.5mg, the adrenal gland stops producing the natural steroid, cortisol. When you gradually reduce (or taper) the dose and come off the pred, with luck, your adrenal gland will kick back into action. But sometimes it doesn't, or it doesn't produce enough. So you may need to keep taking pred indefinitely. However, the adrenal function may take a long time to recover, so it does need careful monitoring.

    Many patients who have been on long term pred seem to find that just a small daily dose - perhaps 1 - 2 mg - keeps them feeling better. This doesn't really make sense in physiological terms and I don't think anyone can properly explain it, but if anyone knows the answer I would be very pleased to learn!

  • I was diagnosed with Wegener's in 1998 and I have had at least three short synacthen tests during the last ten years. These tests are not directly linked to your vasculitis. The tests are as you probably know to monitor the cortisol your adrenal glands produce. The body produces the equivalent of about 7 mg of cortisol. The result of the test will determine the dosage of prednisolone you need to 'make up' the deficency if there is any.

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