Medication: Desmopressin

Please note that none of the information in this document is a substitute for advice from your healthcare professional. Please always consult a medical professional and always check the Patient Information Leaflet that is provided with your medication for more detailed information.

Desmopressin: A quick overview

• Used off-licence to help manage PoTS symptoms
• Helps by increasing blood volume
• Can reduce standing heart rate
• Usually taken occasionally, not every day
• Usually prescribed and monitored by a specialist

What is Desmopressin?

Desmopressin is an off-licence medication that reduces how much urine your kidneys produce. This helps your body retain more fluid.

For some people with PoTS, this increase in fluid can help reduce symptoms when standing.

Desmopressin can be taken as:

• A tablet
• A nasal spray
• A melt placed between your gum and your lip

What does “off-licence” mean for me?

Desmopressin is officially licenced in the UK for conditions like

• Bedwetting (nocturnal enuresis)
• Diabetes insipidus

Its use in PoTS is considered off-licence because PoTS is not an officially approved indication.

This means:

• It must be prescribed specifically for you by a healthcare professional familiar with using desmopressin in PoTS
• The healthcare professional takes on added responsibilities when prescribing it off licence
• A healthcare professional is responsible monitoring your response

How does Desmopressin help with PoTS Symptoms?

Desmopressin helps the kidneys reabsorb water back into the body.

This:

• Increases circulating blood volume
• Can reduce the rise in heart rate when standing
• Does not usually affect blood pressure

What does the evidence show?

• Evidence is based on small clinical studies
• Reported benefits are short term
• Long-term safety data in PoTS are limited

How and when is it taken?

Desmopressin is often prescribed as a “pill in the pocket” medication.

This means:

• It is taken occasionally, not every day
• Usually for special events or outings, especially where extra standing is anticipated
• Common oral doses are 0.1 mg or 0.2 mg daily as needed

Always take desmopressin exactly as directed by your doctor, as dosing may vary depending on your individual situation.

Important lifestyle considerations

Because desmopressin causes you to have more fluid in your body and mimics the effect of drinking more water and increasing salt intake, lifestyle adjustments may be needed.

Fluid and salt intake

• High fluid and salt intake is often recommended for PoTS
• While taking desmopressin, your doctor may give specific guidance on how much fluid and salt to consume

Always follow advice from your care team and contact them if you are unsure.

Who should not take Desmopressin

Desmopressin must be used under strict medical guidance and may not be suitable for those with:

• Low sodium levels in the blood (hyponatremia) or a history of it
• Kidney disease
• Cardiovascular diseases or high blood pressure
• Cystic fibrosis   
• Epilepsy

Medical interactions:

Always inform your care team of other medications, especially loop diuretics such as:

• Bumetanide
• Ethacrynic Acid
• Furosemide
• Torsemide

These should not be taken with desmopressin.

What are the side effects of Desmopressin?

Important

The most serious side effect is low sodium levels (hyponatraemia).

Symptoms may include:

• Headache
• Nausea
• Fatigue
• Dizziness
• Confusion

Other possible side effects include:

• Fluid retention or swelling (face or ankles)
• Flushing

Seek urgent medical help if you experience:

• Severe confusion
• Convulsions
• Signs of an allergic reaction

How do I get and store Desmopressin?

• Desmopressin is typically prescribed initially by specialists familiar with prescribing desmopressin in PoTS
• Follow-up prescribing often managed by your GP
• Available in most large pharmacies with an NHS or private prescription

Store your medication in a cool, dry place, protected from direct sunlight, and out of children’s reach. Verify expiry dates before use.

Useful links

https://bnf.nice.org.uk/drugs/desmopressin
https://www.mayoclinic.org/drugs-supplements/desmopressin-oral-route/description/drg-20088478