Desmopressin (DDAVP)

Desmopressin or DDVAP is..

About 40% of POTS patients experienced significant relief in one trial

a synthetic version of arginine vasopressin, a natural antidiuretic hormone. It’s used to increase water retention by the kidneys – thus increasing blood volume. Unlike vasopressin, desmopressin does not stimulate ACTH release or increase plasma cortisol.

Florinef May Be Effective in Chronic Fatigue Syndrome (ME/CFS) and POTS Because…

it may help with low blood volume and orthostatic intolerance. A subset of patients with ME/CFS and/or POTS have low blood volume which impedes blood flows to the brain, in particular, upon standing.

Chronic Fatigue Syndrome (ME/CFS) / Postural Orthostatic Tachycardia (POTS) Studies

A 30 person, randomized, cross-over desmopressin study in 2012 found that 0.2 mg orally/day desmopressin  resulted in reduced heart rate and symptoms in POTS patients after standing for 10 minutes.  Blood pressure was unchanged.

A larger (72-person) long term (@ 12 months) 2015 study also found that DDAVP decreased the heart rates upon standing and improved symptoms ( dizziness, fatigue, palpitation, nausea and syncope). About 2/3rd’s of patients in the larger study – all of whom were considered treatment resistant – were able to tolerate the drug. Of those about 40% experienced significant symptom relief upon standing including reductions in dizziness, fainting, fatigue, anxiety and palpitations.

Two DDAVP ME/CFS studies have been done. In 1999 DDAVP normalized the pituitary-adrenal response to ovine CRH. In 2017 Miwa found that 120μg desmopressin given for five days ameliorated the symptoms, decreased the heart rate during a 10 minute standing test in patients with low urinary osmotic pressure. Performance status scores for the activities of daily living were also improved.

Side Effects 

While noting that DDAVP is generally safe, Vanderbilt researchers reported using it as a “3rd line” treatment; i.e. its used only after other treatments have not been successful due to worries about reduced sodium levels (hyponatremia). They typically have their patients use no more than once a week and often for “special occasions” or outings. They report good results from this.

The long term and larger DDAVP POTS study did find hyponatremia (low sodium levels) in 12% of patients, but the authors noted that the lowest sodium level seen was 125 mEq/l, and that sodium levels returned to normal within weeks of stopping the medication.  They stated that “DDAVP appears to be a potentially safe, effective, and inexpensive treatment modality in the treatment of POTS” and called for it be used earlier in a POTS treatment regimen.

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