Managing MCAS

At present, sadly, there is no cure for MCAS. The aim of treatment is to reduce the severity of symptoms and improve quality of life.

There are two main methods for symptom management, the first is through a self-management approach and the second is through the use of medicinal products. Ideally, these two approaches will be combined to achieve the best level of control over the symptoms of MCAS.

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.

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