used to treat neurally mediated hypotension (reduced blood pressure when standing) and POTS (increased heart rate when standing). It’s the only OI drug to receive significant testing in chronic fatigue syndrome (ME/CFS) patients with orthostatic intolerance. Fludrocortisone’s ability to decrease HPA activity (ACTH and cortisol) should be noted given that ME/CFS is characterized by at least mildly reduced HPA axis activity.
Florinef May Be Effective in Chronic Fatigue Syndrome (ME/CFS) Because…
it may help with low blood volume, orthostatic intolerance and POTS. Florinef helps the kidneys retain more sodium which in turn increases blood volume. Florinef’s ability to constrict the blood vessels may help blood stop from pooling in the lower extremities when standing. Patients must increase their salt intake for this drug to work.
Chronic Fatigue Syndrome (ME/CFS) Studies
Two studies, a large randomized, placebo-controlled and double-blinded study lead by Dr. Peter Rowe and a smaller study, suggested Florinef is not effective in treating this disease but there is a catch. Both OI and ME/CFS and heterogeneous conditions with several subsets and Florinef was not combined with other treatments. Two doctors, one of whom was involved in the studies, report that Florinef is very effective in some patients (see below), particularly used in combination with other treatments. A small 2011 study suggested Florinef reduced nausea in about 25% of OI patients.
Dr. Peter Rowe has specialized in orthostatic intolerance in pediatric ME/CFS patients for many years. He reports that Florinef is most effective if used in combination with increased salt intake and low levels of beta blockers. Florinef is counter-indicated in patients with low plasma renin levels. Also see Dr. Rowe’s report.
Dr. Bell reports Florinef works well in about 25% of his patients with younger patients tending to respond better. Bell has rather high standards; if he doesn’t get a 50% increase in activity levels; he stops the drug. Dr. Myhill has not had success with this drug.
Graham and Ritchie reported significant improvement in a short-term postural tachycardia syndrome (POTS) patient treated with increased salt and fluid intake, compression stockings and florinef.
Chronic Fatigue Syndrome (ME/CFS) Patients Report
One mother reports that Florinef has been a ‘like a miracle drug’ for her two boys (10/14). Once he found the right dose one son went from being bedridden to going back to school full time. She stated that drinking lots of fluids and taking lots of salt was key to having Florinef work.
Dr. Rowe recommends increasing salt and fluid intake prior to taking the drug and then beginning with a low dose (1/4 table a day: 0.025 mg). He increases the dose by ¼ table every 4-7 days to 1 tablet. If no serious side effects occur he recommends increasing to a maximum of 1 ½-2 tablets a day (.2 mgs). Dr. Bell will work his way up to 3 tablets a day. If no effects are seen he begins gradually adding salt. If a patient responds he try’s weaning the patient off the drug every six months or so.
Side Effects (not complete)
Because florinef reduces potassium levels, Dr. Rowe recommends patients take a potassium supplements (8-20- mEq) regardless of what their potassium levels are. Other possible side effects are headaches, increased blood pressure, mood swings, etc. Most formulations of Florinef have lactose in them but compounding pharmacies can produce the drug without it. Do not use licorice root with this drug.
Patients can get worse or develop abdominal or chest discomfort or rarely depression. Minor side effects may disappear after a few weeks.