Jonathan Edwards
Senior Member (Voting Rights)
I still don't understand what's the exact problem with fludrocortisone. Could someone kindly spell it out, please?
The basic problem with adrenal steroids is that if you give a small dose the adrenal gland just adjusts to offset the dose and you are no better off and if you give a dose greater than usual daily requirement you both suppress the adrenal completely and induce a range of long term effects.
Long term effects depend on the steroid type to some degree, with fludrocortisone being more on the salt control side and prednisolone more on the inflammation control side. But the main risks are:
Diabetes
Hypertension (potentially stroke)
Muscle wasting
Central obesity
Skin thinning with striae and purpura
Cataracts
It can be argued that a small dose of fludrocortisone might avoid the worst of this but if it is small it will probably make no difference to OI.
Maybe as important, the evidence for needing to retain more salt and water in ME/CFS is not clear. If OI is driven by similar signals from hypothalamus that drive other symptoms it is likely to be irrelevant. If there is reduced blood volume from spending time flat trying to replace that volume may be futile. There may be reduced volume for other reasons but it is hard to know what they would be. It is high time someone did some decent physiological studies.