Florinef (fludrocortisone)

From: 'Fludrocortisone' <a href="https://en.wikipedia.org/wiki/Fludrocortisone">https://en.wikipedia.org/wiki/Fludrocortisone</a>

Fludrocortisone, sold under the brand name Florinef among others, is a <a href="https://en.wikipedia.org/wiki/Corticosteroid" title="Corticosteroid">corticosteroid</a> which is used to treat <a href="https://en.wikipedia.org/wiki/Adrenogenital_syndrome" title="Adrenogenital syndrome">adrenogenital syndrome</a>, <a href="https://en.wikipedia.org/wiki/Postural_hypotension" title="Postural hypotension">postural hypotension</a>, and <a href="https://en.wikipedia.org/wiki/Adrenal_insufficiency" title="Adrenal insufficiency">adrenal insufficiency</a>.<a href="https://en.wikipedia.org/wiki/Fludrocortisone#cite_note-Elks2014-1">[1]</a><a href="https://en.wikipedia.org/wiki/Fludrocortisone#cite_note-IndexNominum2000-2">[2]</a><a href="https://en.wikipedia.org/wiki/Fludrocortisone#cite_note-AHFS2016-3">[3]</a> In adrenal insufficiency it is generally taken together with <a href="https://en.wikipedia.org/wiki/Hydrocortisone" title="Hydrocortisone">hydrocortisone</a>.<a href="https://en.wikipedia.org/wiki/Fludrocortisone#cite_note-AHFS2016-3">[3]</a> It is taken by mouth.<a href="https://en.wikipedia.org/wiki/Fludrocortisone#cite_note-AHFS2016-3">[3]</a> The medication is most commonly used in its <a href="https://en.wikipedia.org/wiki/Acetate" title="Acetate">acetate</a> form.<a href="https://en.wikipedia.org/wiki/Fludrocortisone#cite_note-DayFurst2010-4">[4]</a>

Common side effects include <a href="https://en.wikipedia.org/wiki/High_blood_pressure" title="High blood pressure">high blood pressure</a>, swelling, <a href="https://en.wikipedia.org/wiki/Heart_failure" title="Heart failure">heart failure</a>, and <a href="https://en.wikipedia.org/wiki/Low_blood_potassium" title="Low blood potassium">low blood potassium</a>.<a href="https://en.wikipedia.org/wiki/Fludrocortisone#cite_note-AHFS2016-3">[3]</a> Other serious side effects include <a href="https://en.wikipedia.org/wiki/Immunosuppression" title="Immunosuppression">low immune system function</a>, <a href="https://en.wikipedia.org/wiki/Cataracts" title="Cataracts">cataracts</a>, muscle weakness, and mood changes.<a href="https://en.wikipedia.org/wiki/Fludrocortisone#cite_note-AHFS2016-3">[3]</a> It is unclear if use during <a href="https://en.wikipedia.org/wiki/Pregnancy" title="Pregnancy">pregnancy</a> is safe for the baby.<a href="https://en.wikipedia.org/wiki/Fludrocortisone#cite_note-5">[5]</a> Fludrocortisone is mostly a <a href="https://en.wikipedia.org/wiki/Mineralocorticoid" title="Mineralocorticoid">mineralocorticoid</a>; however, also has <a href="https://en.wikipedia.org/wiki/Glucocorticoid" title="Glucocorticoid">glucocorticoid</a> effects.<a href="https://en.wikipedia.org/wiki/Fludrocortisone#cite_note-AHFS2016-3">[3]</a>

Fludrocortisone was patented in 1953.<a href="https://en.wikipedia.org/wiki/Fludrocortisone#cite_note-Fis2006-6">[6]</a> It is on the <a href="https://en.wikipedia.org/wiki/World_Health_Organization%27s_List_of_Essential_Medicines" title="World Health Organization's List of Essential Medicines">World Health Organization's List of Essential Medicines</a>, the most effective and safe medicines needed in a <a href="https://en.wikipedia.org/wiki/Health_system" title="Health system">health system</a>.<a href="https://en.wikipedia.org/wiki/Fludrocortisone#cite_note-WHO19th-7">[7]</a> In the United Kingdom it costs the <a href="https://en.wikipedia.org/wiki/NHS" title="NHS">NHS</a> about 1.52 pounds per month.<a href="https://en.wikipedia.org/wiki/Fludrocortisone#cite_note-BNF69-8">[8]</a> In the United States the wholesale cost of a month of medications is about 11.96 USD.<a href="https://en.wikipedia.org/wiki/Fludrocortisone#cite_note-9">[9]</a>

From: 'Florinef (Fludrocortisone) for Chronic Fatigue Syndrome (ME/CFS)' <a href="https://www.healthrising.org/treating-chronic-fatigue-syndrome-mecfs/drugs-for-chronic-fatigue-syndrome-mecfs-treatment/florinef-fludrocortisone-for-chronic-fatigue-syndrome-mecfs/">https://www.healthrising.org/treating-chronic-fatigue-syndrome-mecfs/drugs-for-chronic-fatigue-syndrome-mecfs-treatment/florinef-fludrocortisone-for-chronic-fatigue-syndrome-mecfs/</a>

Florinef is  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 <a href="http://www.ncbi.nlm.nih.gov/pubmed/11150109" >study lead by Dr. Peter Rowe</a> and <a href="http://www.ncbi.nlm.nih.gov/pubmed/9570178" >a smaller study</a>, 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 href="http://www.ncbi.nlm.nih.gov/pubmed/21796356" >A small 2011 study </a>suggested Florinef reduced nausea in about 25% of OI patients.

Doctors Report

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 <a href="http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm" >Dr. Rowe’s report</a>.

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 <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3029273/" >(POTS) patient treated with increased salt and fluid intake, compression stockings and florinef. </a>

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.

Dose

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.

From: HealthRising user Hello! on 'Florinef (fludrocortisone)' <a href="https://www.healthrising.org/forums/threads/florinef-fludrocortisone.2211/">https://www.healthrising.org/forums/threads/florinef-fludrocortisone.2211/</a>

My 16 year old(with ME/CFS, POTS and various signs of dysautonomia) has been on florinef for a month now and it has had a miraculous effect!

Here's what we've seen:

Dramatic energy increase- nearing vitality! The PEM has not disappeared though, so it is quite a challenge to not act on all of new energy.
The severe brain fog has lifted and my brilliant child has returned! The schoolwork, which had been impossible for the past few years, has begun again!
Light, noise and food sensitivities are dramatically better. Within hours of the first dose our family went from living in a dark, silent house, to living with the windows, curtain and blinds wide open, with singing and music playing often, even while doing schoolwork!
Temperature sensitivity has improved, hands are often warm again, feet are warmer, but still cold, perspiration has returned, we hadn't even realized it was gone!
Constipation, gone!
A feeling that is so strange and horrible that it can't even be described is gone!

The effects have increased over the month.

A PEM a episode early on was still quite severe, but it resolved much faster than usual.

Three days ago my child caught a cold, and underneath the cold, still feels an overriding sense of health!

From: HealthRising user AnneVA on 'Florinef (fludrocortisone)' <a href="https://www.healthrising.org/forums/threads/florinef-fludrocortisone.2211/">https://www.healthrising.org/forums/threads/florinef-fludrocortisone.2211/</a>

Do have the potassium checked periodically. Florinef can deplete it. Some dysautonomia dr.'s may add licorice root to it as the herb acts in a similar fashion. Be wary of that combination and do extra due diligence on checking the potassium levels.

From: HealthRising user Laura L on 'Florinef (fludrocortisone)' <a href="https://www.healthrising.org/forums/threads/florinef-fludrocortisone.2211/">https://www.healthrising.org/forums/threads/florinef-fludrocortisone.2211/</a>

I started fludrocortisone recently and have noticed I am able to be upright longer throughout the day and brain fog has diminished a bit for now. However I do have side effects of frequent urination and bladder twinges, slight pressure in the head, tinnitus increased and very slight sensation in lower right side of back- that just started today. The benefits definitely outweigh the side effects. Just wondering if, will these side effects diminish as I continue to adjust to the drug? Thanks! Laura