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Fludrocortisone for CFS

Thursday 29 July 2010

FlorinefFrom the Living With Chronic Fatigue Syndrome blog:

Fludrocortisone for CFS

July 27, 2010 by cfssufferer

What is Fludrocortisone?

Fludrocortisone is a synthetically produced corticosteroid. Corticosteroids are a group of steroid hormones produced in the adrenal cortex. The most common brand name of Fludrocortisone is ‘Florinef.’

Fludrocortisone’s Uses and Mechanism of Action in CFS

Fludrocortisone is used to treat a range of symptoms and illnesses. ‘CFS’ is an umbrella term and encompasses a range of illnesses with varying etiologies and various symptoms. CFS patients have therefore used Fludrocortisone for a range of purposes. Some CFS patients with the following symptoms/illnesses have used Fludrocortisone to specifically treat these symptoms/illnesses:

  • Neurally mediated hypotension (NMH)
  • Postural orthostatic tachycardia syndrome (POTS)
  • Orthostatic intolerance
  • Cerebral salt wasting
  • Aldosterone (a hormone) deficiency
  • Addison’s disease
  • Adrenal insufficiency

Fludrocortisone has also been used to treat CFS in a more general sense. It may work for CFS patients not fulfilling any criteria on the above list because Fludrocortisone may:

  • Help the kidneys keep more sodium. This consequentially may increases blood volume which is low in CFS patients.
  • Restrict the ability of blood vessels to expand. This may help the blood reach the peripheries of the body. CFS patients often have a low volume of blood reaching bodily extremities.
  • Cause blood pressure levels to rise. Blood pressure is often low in CFS patients.

Fludrocortisone and CFS - Studies

1. The first study to examine the use of Fludrocortisone in CFS patients was called “A preliminary placebo-controlled crossover trial of Fludrocortisone for chronic fatigue syndrome.” The study’s abstract can be found here:http://www.ncbi.nlm.nih.gov/pubmed/9570178

This study gave 25 CFS patients a 0.1-0.2mg dose of Fludrocortisone for 6 weeks. 5 patients pulled out of the study. The remaining 20 patients didn’t experience any improvement as a result of the Fludrocortisone treatment. The incidence of side effects was similar in both the Fludrocortisone part of the trail and the placebo part of the trial.

2. The second study to examine the use of Fludrocortisone in CFS patients was called “Fludrocortisone acetate to treat neurally mediated hypotension in chronic fatigue syndrome: a randomized controlled trial.” The abstract can be found here: http://www.ncbi.nlm.nih.gov/pubmed/11150109

This study looked at Fludrocortisone treatment in people with both CFS (based on the CDC definition) and neutrally mediated hypotension (NMH.) The presence of the patient’s NMH was determined by a tilt table test. 0.1mgs of Fludrocortisone was given for 9 weeks. 14% of those treated with Fludrocortisone experienced at least a 15point improvement in their wellness score. This is compared to 10% of the placebo patients experiencing at least a 15 point improvement in their wellness score. This result was not significant and the study authors concluded that Fludrocortisone was no more effective than the placebo.

3. The third study examined the use of both Hydrocortisone and Fludrocortisone in CFS patients. “Combination therapy with hydrocortisone and fludrocortisone does not improve symptoms in chronic fatigue syndrome: a randomized, placebo-controlled, double-blind, crossover study.” The abstract can be found here: http://www.ncbi.nlm.nih.gov/pubmed/12829200

This study was a 3 month combined treatment study that gave CFS patients (who fulfilled the CDC criteria) 5mgs of Hydrocortisone and 50mcgs of Fludrocortisone. The combined therapy of both Hydrocortisone and Fludrocortisone made no difference to the patient’s CFS, when compared to the placebo.

My Hypothetical Fludrocortisone Study

If I was designing a Fludrocortisone study, I would eliminate the variables in which Fludrocortisone therapy is less likely to work. This is due to all of the Fludrocortisone study results to the present having the same results as the placebos. I would also include different CFS definition groups in the study. The patient group that Fludrocortisone mainly works on are young people, aged under 25. Also Fludrocortisone tends to work better on patients that increase their water and salt intakes. In my hypothetical study, I would have the first group of young (under 25) CFS patients take Fludrocortisone with an increased salt diet and increased water intake. I would have the second group of young (under 25) CFS patients not increase their salt or water intake on Fludrocortisone. I would have the third group be a group of CFS patients aged over 25, who increase their water and salt intake on Fludrocortisone.

I would also have more placebo controlled groups only increasing their water and salt intake and not taking Fludrocortisone and other placebo controlled groups not taking salt, water or Fludrocortisone. If this small, pilot study was successful for one group, a larger scale study could be completed to confirm the results.

This study would determine (by maximising the chances of success) if Fludrocortisone works on anyone in CFS, even just a subset of patients.

What the CFS Specialists Say About Fludrocortisone

Dr David Bell tries Fludrocortisone on almost all of his CFS patients. He says that it works well in approximately 25% of his patients. If the drug doesn’t result in at least a 50% increase in the patient’s activity levels, he tends to stop the drug. Dr Bell also believes that Fludrocortisone works best on younger patients who are still active to a certain degree

Dr Peter Rowe also frequently uses Fludrocortisone.

Dr Charles Shepherd says that he tends to err on the side of caution and not prescribe low doses of Fludrocortisone to CFS patients because of its potential side effects. http://www.prohealth.com/library/showarticle.cfm?libid=9575

Dr Paul Cheney does not use Fludrocortisone.

Dr John Graham does not use Fludrocortisone.

How to take Fludrocortisone

Dr Rowe and Dr Bell have two different methods of starting patients on Fludrocortisone. Dr Rowe recommends starting to increase the salt and water intake up to 2 weeks prior to starting the drug. He starts patients on a low dose of Fludrocortisone, ¼ of a tablet (0.025mg.) He subsequently increases the dose by ¼ of a tablet between 4 and 7 days later. This continues until a maximum dose of 1 ½ to 2 tablets (0.2mgs) in reached. This protocol is based on assuming that no side effects occur. If side effects occur the protocol is subsequently modified.

Dr Bell will gradually work patients up to 3 tablets a day. If no side effects occur, he starts to gradually add salt and water to the patient’s diet.

It is imperative to take a potassium supplement while taking Fludrocortisone. It is also important to have blood tests to make sure various blood levels such as electrolyte levels are normal while on Fludrocortisone.

It is essential to increase salt and water levels while on Fludrocortisone. The studies mentioned above prove that Fludrocortisone probably won’t work unless salt and water levels are increased.

Hormones and XMRV

I was reluctant to take Fludrocortisone due to it being a hormone. At present there is a lack of clarity regarding which hormones can cause XMRV to replicate and which hormones don’t cause it to replicate. I have not been tested for XMRV due to the test not being available in Australia at present. The link between XMRV and CFS also isn’t fully understood.

Dr Mikovits has mentioned androgens, cortisol, progesterone, pregnenolone, testosterone and estrogen as possibly causing XMRV to replicate. She has also left the door open for other hormones to cause XMRV replication. It is unclear at present whether supplementing due to low blood levels of these hormones will cause XMRV to replicate. Ultimately taking Fludrocortisone is a risk as it hasn’t been determined whether it will cause XMRV replication.

Fludrocortisone and me

I started to increase by salt and water intake on the 26th of July. I will gradually increase the amount of salt I take this week. I am taking salt tablets to help me increase my salt intake. I will not overdo the amount of water I consume. In the past, a naturopath recommended I increase just my water levels (without increasing my salt levels.) I went from drinking 2 litres of water a day to 4 litres. My CFS symptoms worsened as a consequence. I will be taking approximately 2.5 litres of water a day while on Fludrocortisone.

I will also be taking a potassium supplement with the Fludrocortisone. I will start taking 0.025mg of Fludrocortisone on the 2nd of August. Assuming I don’t have any side effects, I will be increasing the dose gradually up to 0.2mgs. If Fludrocortisone doesn’t make any difference to my condition, I don’t want to take it for more than 2 or 3 months.

Fludrocortisone may work for me because

  • My heart rate increases by over 30 beats per minute on standing
  • My blood pressure increases on standing.
  • I have poor peripheral blood flow.
  • I have relatively low blood pressure.
  • I am 22 years old, Fludrocortisone tends to work better on younger people.
  • Many of my CFS symptoms fit neatly into an adrenal fatigue diagnosis.
  • Several years ago, whenever I went into the cold beach water my condition improved for 24 hours. This may be due to by blood vessels contracting, which is what Fludrocortisone may do.
  • Liquorice helps me when I am in a crashed state. Liquorice root has a similar mechanism of action as Fludrocortisone.
  • My “crashing” is very similar to the crashing involved in adrenal fatigue.

Side effects

There are many side effects of Fludrocortisone. The most common include:

  • Potassium deficiency
  • Headaches
  • Increased blood pressure
  • Mood swings
  • Increased severity of various CFS symptoms

A more comprehensive list of possible Fludrocortisone side effects can be found here: http://www.drugs.com/sfx/fludrocortisone-side-effects.html

The extensive list of potential side effects and the high percentage of CFS patients experiencing side effects on Fludrocortisone were deterrents to me trying it. I eventually decided to take Fludrocortisone due to starting on a low dose, monitoring side effects and subsequently increasing the dose.

I am writing this article about Fludrocortisone as a layman. If you are interested in trying Fludrocortisone discuss the pros and cons with your doctor.

Conclusion

The jury is still out regarding the use of Fludrocortisone treatment in CFS. Studies have proven that Fludrocortisone by itself probably won’t improve CFS symptoms. I will be increasing my salt intake and water intake while taking the drug. I start Fludrocortisone at a low dose on the 2nd of August. The varying CFS specialist’s comments on Fludrocortisone highlight the level of controversy regarding this drug as a CFS treatment. In the coming weeks, I will blog again about Fludrocortisone, discussing any effect it has had on me.

The above originally appeared here.

 


 

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