Living with MCAS

Keep a symptom diary

Write down your symptoms, what you ate and drank, what you were doing, the temperature, your stress levels and, if relevant, where you are in your period. Over a few weeks, patterns can show your triggers. Take the diary to your appointments.

Food

Some people find certain foods make their symptoms worse. Do not cut out lots of foods on your own, as this can make it hard to eat a healthy diet. If you think food is a trigger, ask your GP or specialist about seeing a dietitian.

Heat and temperature

• avoid very hot baths and showers
• dress in layers, so you can adjust easily
• use a fan and keep cool in hot weather
• avoid sudden changes in temperature where you can

Stress, rest and exercise

• pace yourself and plan rest, especially on busy days
• try gentle ways to manage stress, such as breathing exercises
• if exercise is a trigger, start slowly and build up gently, and stop if you feel unwell

Plan for flares

• keep your medicines with you, and a written list of what you take
• agree a flare plan with your doctor, so you know what to take and when to get help
• tell people you live, work or study with what to do

Be ready for anaphylaxis

If you have adrenaline auto-injectors:

• carry 2 with you at all times
• check the expiry dates and sign up for reminders from the maker
• consider a medical ID bracelet or card

Your mental health

Living with symptoms that are hard to predict, and that others may not understand, can be very stressful. Talk to your GP if you are feeling low or anxious. You can call Samaritans free, any time, on 116 123.

Support

Mast Cell Action is a UK charity that offers information and support for people with MCAS and their families.