The Lyndonville Journal:

Florinef: Clinical Experiences

David S. Bell, MD, FAAP

Published in Lyndonville News, November 2000

In 1994, Peter Rowe and colleagues at Johns Hopkins published an important paper, which suggested that fludrocortisone or Florinef(TM) could be an effective treatment for CFS. Since that time I have been very intrigued by the use of Florinef, particularly since the first patient I used it on had a dramatic response, essentially allowing her to attend college. I have also been enthusiastic about it as it increases circulating blood volume and affects the adrenergic receptors on the blood vessels.

There has been disappointment about Florinef use since that time, and some reports suggest that it has little effect. I would like to outline my views about this drug and how I attempt to use it in patients with CFS. I had hoped to pull all the records of patients treated with Florinef and report their results, but, frankly, it is too much work. And as it has not been used in a double blinded study, few would believe it. However, for what it is worth, here's what I think about Florinef.

I think Florinef is the best drug for use in treating CFS, and I try it on almost everyone. I would guess it has success in roughly 25% of patients, and I think it is possible to predict the patients who will respond. It is safe, and even when it has not worked on a patient I have not regretted trying it, although it can cause the "headache from hell." The object of this treatment is very simple - to increase the amount of daily activity and decrease symptom severity. If the activity is not increased by 50%, I usually abandon the trial. The trial can be repeated, and some persons who did not respond the first time may have a good response the second time. As a principle, it works better on younger patients and those who start off with three to six hours of activity daily. In addition, it has a better effect when there are prominent orthostatic symptoms and when the blood volume is measured to be low.

Florinef's action is that of aldosterone - it retains salt and thus increases intravascular volume. I start off with very low doses, 1/4 tablet for several days and gradually increase, watching the blood pressure and pulse. If there is no response I cautiously increase the dose by 1/4 or 1/2 tablet until one of three things happen: A) a good increase in activity and reduction of symptoms, in which case I hold at that dose and maintain use, B) The "headache from hell" begins, in which case I stop or lower the dose. If there had been no response at the dose prior to the headache, I discontinue the trial. One problem that patients have is that they are so nervous about the headache from hell, they mistake regular headaches for it and we stop prematurely. C) if no response by three tablets a day, I begin increasing salt in the form of salt tablets while maintaining the Florinef. Again, this is a gradual increase in salt.

Because the aim is to increase intravascular volume, it is important to drink lots of fluids. Florinef will reduce potassium so I usually supplement with low doses of potassium, although I have not seen worrisome potassium levels when I check the blood tests. A few patients will have definite changes in mood, in which case I discontinue the trial.

One common misunderstanding about Florinef is that it is a steroid, but it is not like prednisone or cortisone. Florinef is a mineralocorticoid acting mainly upon salt. Prednisone is a different type of steroid, a glucocorticoid, and has lots of systemic side effects if taken over time. Florinef is only 1/100th as strong as prednisone as a glucocorticoid. We do not know the long-term side effects of Florinef in its use in CFS. It may thin the bones over years. If a patient is doing well on Florinef, I try to taper the dose every six months or so. In those patients lucky enough to return to normal health, I discontinue the drug.

Some patients may become hypertensive while taking Florinef. In the past I have stopped the drug because of this. Now I am trying to dilate the vessels with a calcium channelblocker to bring the pressure to normal while maintaining a good blood flow. I do not know as yet if this will be successful. A newsletter article for next year.

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