Managing MCAS

At present, sadly, there is no cure for MCAS.

With treatment, the aim is to reduce the severity of symptoms and improve the quality of life for those affected.

The two main methods used to treat MCAS include a self-management approach and the use of medications.

Ideally, these two approaches will be combined to achieve the best level of control over symptoms, offering more stability and a better quality of life for those living with MCAS.

A combination of multiple supportive measures is often needed to enable those with MCAS to reduce the frequency and severity of symptoms.

Self Management

Avoiding triggers is a key part of managing MCAS and relieving symptoms. If you have been able to identify specific triggers of your symptoms – for example, specific foods or chemicals, exercise or stress – these triggers should be avoided as much as possible to prevent a reaction. 

This can include adopting specific diets such as low histamine or FODMAPS; controlling blood sugar fluctuations can also be beneficial. Some people may need to explore a combination of diets depending on their specific triggers, and if this is complicated, seeking help from either a dietician or nutritionist with knowledge of MCAS can be helpful.

This can also mean careful management of your personal environment, ensuring your home is free of your known triggers or those commonly understood to affect people with MCAS.

Scented products such as candles, perfumes and air fresheners are classic examples of common triggers. Cleaning products can also be problematic for some.

Of course, in many cases, MCAS triggers are challenging to identify and new triggers may continue to develop over time. Sometimes, it is not always practical or even possible to avoid every trigger all of the time, particularly in public spaces. 

Certain medicines, such as codeine, are also known to trigger MCAS symptoms. Some people with MCAS also benefit from avoiding non-steroidal anti-inflammatory drugs (NSAIDs), such as aspirin or ibuprofen. Understanding your unique set of triggers can help to better identify which medicines and excipients should be avoided. This should be done with the support of a medical professional.

Many people find they experience significant relief upon isolating their triggers and avoiding them where possible.

Medical Management

Multiple medicines can be used to help alleviate the symptoms of MCAS. These include mast cell stabilisers; which help restore stability to the mast cell and reduce its reactivity to different triggers, and mediator blockers; which block the release or the effect of different mediators released by the mast cell.

Due to the variation in triggers, mediator release and symptoms across individuals with MCAS, a medical treatment that works for one person may not work for another and the response to treatment is not always predictable.

The availability of treatments varies, and some treatments are reserved only for the most severe cases of MCAS. There is hope for the possibility of personalised MCAS treatment in the future, where prescriptions are tailored to a person’s specific cause, triggers and symptoms, but further research is required to achieve this.

An added complication for the treatment of MCAS arises from the possibility that some drugs (or the additives or preservatives in them) can be triggers for MCAS and this may cause an adverse reaction to a medicine.

This can make it a lengthier and more complicated process to identify a successful medical treatment regimen for someone with MCAS. However, with a dedicated ‘trial and error’ approach, under careful medical guidance, many people with MCAS are eventually able to find a medical management process that works for them.

There is more information about specific medications which can be used to treat MCAS which you can share with your medical team here.

Come along to our virtual sessions to meet other people on their journey to self-management.

Rescue Bag - Be Prepared

Living with MCAS can mean that unexpected reactions may occur at any time. Some of our community find that putting together a rescue bag ensures they you have everything they need to manage and mitigate symptoms quickly and effectively.

It's ideal for taking to school or work or to carry when on the go. With all necessary treatments and tools in one place, you can be prepared to manage your MCAS on the go.

You may consider keeping the following in your rescue bag:

Medications (preventative and rescue), Toilet roll (if different toilet rolls are a trigger for you), a Radar key, hand soap (if different soaps are triggers for you), Toilet seat covers to protect you from contact reactions.

Try to choose a bag that has organised compartments, which allows for fast access to critical items and remember to let those close to you know what you are carrying so they can help you if needed.

What you’ll find here

Resources include:

• Managing symptoms and flare-ups
• Identifying and avoiding triggers
• Diet, nutrition, and lifestyle considerations
• Mental health and emotional wellbeing
• Advocacy and self-management tools

Living with MCAS can be challenging, but with understanding and support, many people find ways to adapt and regain control over their lives.