Medication: Octreotide

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.

Octreotide: A quick overview

• Used off-licence in the UK to help manage PoTS symptoms
• Helps by reducing blood pooling in the abdomen
• Used for severe or treatment-resistant PoTS
• May reduce PoTS symptoms when standing
• It’s common side effects include abdominal cramps, nausea and high blood pressure when lying down
• Usually taken as daily or monthly injections
• Must be prescribed and monitored by a specialist

What is Octreotide? 

Octreotide is a somatostatin analogue. It mimics the hormone somatostatin that acts as a splanchnic vasoconstrictor, narrowing blood vessels in the abdomen.

For some people with PoTS, blood pools in the abdomen when standing. Narrowing these blood vessels can improve blood flow to the heart, relieving PoTS symptoms like fatigue and dizziness.

Who is usually prescribed Octreotide?  

Octreotide is not usually a first-line treatment for PoTS. 

It may be considered if you: 

• Are severely affected by PoTS
• Have not responded well to other treatments such as fludrocortisone, midodrine and beta-blockers

Because octreotide can cause significant side effects such as abdominal cramps, nausea and possible long-term use complications such as glucose intolerance; it is used cautiously.

What does “off-licence” mean for me? 

Octreotide is officially licensed in the UK for uses such as

• Treating Acromegaly (excess growth hormone)
• Treating symptoms of certain carcinoid tumours
• Preventing complications following pancreatic surgery

Its use in PoTS is considered off-licence because PoTS is not a formally approved indication for this drug.

This means:

• It must be prescribed specifically for you by a healthcare professional familiar with PoTS.
• A healthcare professional is responsible monitoring your response.

How does Octreotide help with PoTS symptoms?

By constricting  the gut’s blood vessels, octreotide can:

• Suppress the excessive rise in heart rate when standing
• Reduce the dizziness and chronic fatigue associated with PoTS

What does the evidence show?

• Evidence is based on small clinical studies
• Most research involves severe or treatment-resistant PoTS
• Reported benefits are short term
• Long-term safety data in PoTS are limited

How and when is it taken? 

Octreotide can be administered by:

• Short-acting, subcutaneous injection: Injected under the skin of the hip, thigh, or abdomen 2 to 6 times per day.
• Long-acting, intramuscular injection: A deep injection into the buttocks given once every 4 weeks.
• Insulin Pump: Continuous delivery under the skin during waking hours

How do I get and store Octreotide? 

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

Injected octreotide should be stored in the refrigerator (do not freeze):

• Vials may be kept at room temperature, away from heat and direct light, for up to 14 days.
• After first use of the prefilled pen, you can keep it at room temperature, away from heat and direct light, for up to 28 days.
• Throw away used needles in a hard, closed container that the needles cannot poke through. Keep this container away from children and pets.

Verify expiry dates before use and throw away any unused medicine.