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.
Florinef May Work in Chronic Fatigue Syndrome (ME/CFS) Because…
it helps the kidneys retain more sodium which in turn increases blood volume. It also helps the blood vessels to constrict more easily. 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 and a smaller study, suggest that Florinef is not effective in treating this disease but there is a catch. Both OI and ME/CFS and heterogeneous conditions with several subsets. Two doctors, one of whom was involved in the studies, report that Florinef is very effective in some patients (see below)
Chronic Fatigue Syndrome (ME/CFS) Doctors Report
Dr. Bell reports that he tries Florinef on almost all his patients and that it works well in about 25% of them. In general it seems to work best on younger patients who are still somewhat active. He looks for a 50% increase in activity levels; if he doesn’t get that then he stops the drug. Also see Dr. Rowe’s report.
Dr. Rowe reports that if used in combination with increased salt and other medications, such as a low dose of beta blockers, Florinef may be helpful in some patients. Florinef is counter-indicated, however, in patients with low plasma rennin levels.
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)
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.
(This and all sections of the Phoenix Rising website are compiled by a layman. They are not a substitute for a physician and are for informational uses only. Please discuss any treatments in these pages with your physician.)1 comment