1. FLORINEF

Formal (generic) name: fludrocortisone

Type of drug: a mineralocorticoid steroid

Action: Florinef acts in the kidney to help the kidney retain sodium that would otherwise be lost in the urine. It helps the body avidly retain the salt you eat. It does so at the expense of losing potassium into the urine, so it is important to take in adequate amounts of potassium each day (a list of foods high in potassium is appended). In addition, we now recommend potassium supplements when people start on Florinef, regardless of the serum potassium level, and especially if individuals remain on the drug for several months. A sustained release potassium preparation (such as K-Dur 10 mEq or K-Dur 20 mEq, or Slow-K 8 mEq) given once daily has been well tolerated by our patients.

Common confusions: Cortisone and fludrocortisone differ. Florinef has none of the anti-inflammatory properties of cortisone or prednisone, and it has no effect on blood sugar as cortisone does. Florinef is *not* a muscle building (anabolic) steroid.

Common side effects: To reduce the chance of Florinef causing an elevated blood sodium level, make sure to drink lots of fluids while taking Florinef. Some individuals complain of headache after Florinef and some develop worse CFS symptoms (more lightheadedness or fatigue), abdominal discomfort of a new type or severity, new chest discomfort, or tearfulness and depression. The latter occurs in fewer than 1 in 20 patients, but patients need to be aware of this when they start on the drug, and to know to stop Florinef is such depressed mood occurs.

Some have found that minor side effects will disappear after a couple of weeks, and it is worth persevering with the medication provided that the side effects are minor. Some develop worse acne on Florinef. The tablet has a tiny amount of lactose in it, and may cause discomfort to those who are extremely allergic to milk protein. Special pharmacies can compound the drug without lactose (we refer patients to Abrams Royal Pharmacy, 8220 Abrams Rd., Dallas, TX 75231; Tel: 214-349-8000; Fax 214-341-7966; e-mail: bscarbro@ix.netcom.com.

With high doses, or even low doses over a long period of time, Florinef can lead to an elevation of blood pressure (BP). For this reason, we recommend that BP be monitored carefully, especially in the weeks after starting on the drug, and monthly once a stable dose is achieved.

Suggested doses for CFS patients: Patients with chronic fatigue syndrome who also have neurally mediated hypotension often have medication sensitivities and appear to benefit from a gradual increase in their Florinef dose. We recommend beginning with a week of increasing salt and fluid after tilt testing before starting on Florinef to ensure better tolerance of the drug. Once you are ready to start, begin with 1/4 tablet per day (0.025 mg). If the 1/4 tablet dose is tolerated for 4-7 days, increase to 1/2 tablet for 4-7 days, then to 3/4 tablet or a full 0.1 mg tablet. Some patients report that splitting the dose (half in the morning and half with the evening meal) provides a more even effect, but occasionally people have to return to a once a day morning dose because the Florinef causes them to develop insomnia.

Each patient's tolerance of the drug, and response to it is somewhat different, so we recommend regular visits while the doses are being adjusted. If people continue to experience some benefit from week to week at a particular dose, it makes sense to continue on that dose. If there are no adverse effects on a dose of 0.1 mg per day, but no impressive therapeutic benefits have occurred after about a month, we will try increases to a maximum of 0.15 or 0.2 mg (1 1/2-2 tablets) per day. Whether further increases would be beneficial is unclear. If unsure about whether the drug is having a beneficial effect, it can be stopped for a few days to see if symptoms worsen. When Florinef is helping somewhat, we usually continue this medication and then add other classes of medication to it.

Comments: It is important to be sure that you are taking an adequate amount of fluid. We recommend checking the serum electrolytes about 2-4 weeks after each dosage increase.

Use in pregnancy: consult with your doctor.

2. TENORMIN

Formal (generic) name: atenolol

Type of drug: a beta-blocker

Action: Atenolol blocks the effects of adrenaline (epinephrine), and acts both to decrease the heart rate and to prevent the forceful heart contractions that kick-start the "fainting reflex" in neurally mediated hypotension.

Common side effects: Some individuals complain of headaches or fatigue after atenolol, and others have worse lightheadedness or worse CFS symptoms in general. Like other beta-blocker drugs, atenolol can lead to constriction of the airways in individuals with a history of asthma. If cough or wheezing develop soon after starting the drug, it may need to be stopped. For those with mild asthma, our impression has been that an inhaled steroid (e.g., Azmacort, Flovent) may allow patients to tolerate the beta-blocker without increased airway reactivity. Atenolol can also cause emotional depression. Atenolol is less likely than other beta-blocker drugs (such as propranolol [Inderal]) to lead to nightmares, confusion and hallucinations. Atenolol and other beta-blocker drugs can interfere with the body's ability to correct low blood sugar, so the drug must be used with extreme caution (if at all) in diabetics. The activity of the drug can be decreased when it is used in conjunction with non-steroidal anti-inflammatory drugs such as ibuprofen (Motrin).

Doses: The usual starting dose of atenolol for older adolescents and adults is 50 mg per day, but doses of up to 100 mg per day are used. We usually aim for 1 mg of atenolol for every kg of body weight. For example, an individual weighing 62 kg (136 lb) would likely do well with between 50 and 75 mg of medication per day.

Use in pregnancy: consult with your doctor.

3. NORPACE

Formal (generic) name: disopyramide

Type of drug: an anti-arrhythmic, anti-cholinergic drug

Action: Norpace blocks the response to adrenaline (epinephrine), and prevents the forceful heart contractions that occur in neurally mediated hypotension.

Side effects: Some individuals complain of headaches or fatigue after Norpace, and others have worse lightheadedness. Other possible side effects are dry mouth, constipation, blurred vision, and impaired urination. This drug can activate glaucoma in some individuals. Norpace should not be taken with erythromycin, clarithromycin, azithromycin, phenothiazines, trimethoprim- sulfamethoxazole, cisapride, or other Class 1a anti-arrhythmic agents because of the potential for triggering serious heart rhythm abnormalities. For similar reasons, it should be used with great caution in those on tricyclic antidepressants. Due to its ability to reduce the forcefulness of the heart's pumping action and to trigger arrhythmias, its use should be considered very carefully in those with heart disease. Use of the drug by those already taking beta-blockers or calcium channel blockers requires similar caution.

Doses: Typically the dose is 100-200 mg of the CR (sustained release) preparation twice daily, although much higher doses are sometimes tolerated, and lower doses are sometimes effective. It is preferable to take it on an empty stomach, an hour before or two hours after eating, but it can be taken with food to reduce stomach irritation. Some individuals with medication sensitivities need to have the drug started at 100 mg each morning for a week, with increases of 50 or 100 mg per week (using the 150 mg CR capsule).

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