TAMS has produced this resource for individuals seeking assessment or care for mast cell activation disorders (MCADs), including mastocytosis and mast cell activation syndrome (MCAS). It aims to support you in preparing for appointments related to MCAD assessment, diagnosis or management, but it is not prescriptive. Some questions may apply to your situation, while others may not; you are encouraged to take what is relevant to you and leave what is not.
Note: If you are a parent or carer attending a paediatric appointment, you may also find the dedicated Preparing for a paediatric appointment section especially helpful. These questions focus on the more unique needs of children, but families should also review the MCAS and mastocytosis sections, as testing and management questions apply across all ages.
Preparing for your appointment
You may find it helpful to bring brief notes on:
- your symptoms and how they fluctuate
- your worst flare severity (for example, -/10)
- any patterns you have noticed
- strategies or medications you have tried and whether they help
Explore:
- General questions (relevant to all MCADs)
- Preparing for a paediatric appointment
- After diagnosis (for all MCADs)
General questions (relevant to all MCADs)
Understanding where you are in the diagnostic process
- Where am I currently in the diagnostic process, and what steps remain to confirm or exclude this diagnosis?
- How long might the diagnostic process take in my situation?
- How often should I see you while we are working toward a diagnosis and a treatment plan?
- Are there tests you recommend prioritising based on my symptoms?
Coordinating care and interim support
- Can you update my GP or other clinicians as we progress through my diagnosis and management process? Can these doctors reach out to you if they need guidance between reviews?
- Is my current general practitioner able to help manage my symptoms and adjust medications between appointments?
- Can you provide guidance on anything I can do between now and my next appointment to support improvement in my symptoms and quality of life? For example, should I see another allied health professional or specialist to help with specific symptoms (exercise physiology, dietetics, gastroenterology, optometry, pelvic floor physiotherapy, etc.)?
- If I am struggling to maintain my work or study commitments due to symptoms, can you provide an interim letter outlining temporary adjustments or considerations until my diagnosis and treatment plan are clearer?
Additional questions that may apply to mastocytosis
(If mastocytosis is suspected or raised by your doctor.)
- Should I be tested for the KIT D816V mutation via blood or bone marrow, and how is that decision made?
- Do I need assessments for B- or C-findings?
- Should I be tested for hereditary alpha tryptasemia (HaT)?
Additional questions that may apply to MCAS
(If MCAS is suspected or raised by your doctor.)
- Does my presentation suggest primary, secondary or idiopathic MCAS, and what other testing may be needed to rule out other causes?
- How will we determine whether flares or reactive episodes represent mast cell activation or another cause?
- Should testing to rule out monoclonal MCAS occur? How is that decision made?
- Should I be tested for hereditary alpha tryptasemia (HaT), especially if my baseline tryptase is chronically elevated?
Preparing for a paediatric appointment
If you are attending an appointment for a child or young patient, it may help to prepare a brief summary of their symptoms, how they change over time, and any monitoring already done at home.
You may wish to bring notes on:
- symptoms and how they fluctuate
- known or suspected triggers (heat, exertion, food, illness, stress, etc.)
- how symptoms affect play, sleep, school or behaviour
- medications or strategies already trialled and their effect
- growth, feeding, nutritional or developmental concerns
- any recent infections or environmental changes
You may wish to ask:
- What are the key signs or symptoms I should monitor at home or school?
- If my child experiences a flare at school/childcare, what steps should be taken and who should be contacted?
- Should we approach scheduled vaccinations with any additional care or specific procedures?
- Even if anaphylaxis has not occurred, should we have an emergency action plan or carry an epinephrine auto-injector, and what factors guide that decision?
- Are there specific activities, sports or exposures that may require modification?
- Are there any medications or procedures we should approach with particular care?
- How will my child’s needs change as they grow, and how often should they be reviewed?
- Are allied health or other specialist referrals recommended for support with sleep, feeding, development, mobility, behaviour or mental wellbeing?
Quality of life and supportive care goals for children
While cutaneous mastocytosis often improves or resolves in childhood, and MCAS is considered rare in children, support beyond immunological management may still be important. If your child is being assessed for, or has a confirmed MCAD, additional care can help them thrive. The following questions focus on your child’s wellbeing, development, comfort and ability to participate meaningfully in daily life. They are examples only, and many families will have unique goals based on their child’s age, interests and needs.
You may wish to ask:
- Are there developmental, nutritional, sleep or behavioural factors we should monitor that may be affected by my child’s symptoms or medications?
- My child is experiencing difficulty with play or participation at school or childcare due to fatigue, flares or pain. Are there allied health services (e.g. occupational therapy, psychology, speech therapy, dietetics, physiotherapy) that could support my child’s development, wellbeing and inclusion?
- Are there environmental or sensory supports (e.g. cooling measures, quiet zones, rest breaks) that may help with symptom stability during daily activities?
- If my child is missing school or struggling to keep up, are there letters or adjustments you recommend requesting from their school?
- We want our child to enjoy swimming/playing sport/attending birthday parties/travelling, etc. Are there ways to make these activities safer or more manageable while we work toward stability?
After diagnosis (for all MCADs)
These questions help you understand and plan for life after your diagnosis, including treatment expectations, medication needs, symptom stability and quality-of-life goals.
Treatment and medication planning
- What is the treatment plan you recommend, and what are the realistic expectations for symptom improvement over time?
- How will we know whether a treatment is working during the adjustment phase? What should I look out for, and do you recommend specific trial periods before deciding whether to continue or adjust medications?
- If this medication does not work as expected at the current dose, are dose adjustments or combination treatments still possible?
- Could any new treatments interact with my existing medications or comorbid conditions?
- Are there environmental or lifestyle adjustments that might help?
- Will I need to adjust my work or education routines temporarily or permanently? If so, can you provide letters outlining recommended adjustments?
- How often will I need to follow up with you?
- What should I do if symptoms worsen?
- Are there clinical trials or emerging therapies relevant to my condition?
Quality of life and supportive care goals for adults
In adults these conditions are permanent and do not regress, but many patients experience meaningful improvement with appropriate management. Discussing supportive care needs can help shape conversations that go beyond medical treatment and focus on your goals, values and daily functioning as a person, not just a patient.
Not all supportive care will come from your immunologist or haematologist; some support will require allied health or other specialists.
Examples of quality-of-life questions you may raise:
- To me, quality of life looks like having a family/being able to mountain climb/maintaining my weight/international travel, etc. Are there any implications from my diagnosis or proposed treatments that could affect these goals?
- I have recently gained or lost weight/hair/energy/ or stamina, etc. Can any of my treatments support these issues, or are there referrals that could help me manage them promptly?
- Something small that would make a big difference is managing my eye inflammation/reducing constant facial redness/flushing/burning/improving breathlessness/sleeping through the night without chronic itch, etc. Can we prioritise these concerns while we work on long-term stability?
- I am unwilling to take medications with mental health or significant weight-gain side effects. How can this preference be respected, and what safer alternatives or shared decision-making approaches can we use if such medications become indicated?
- I would like to safely wear makeup/get tattoos/drink alcohol or engage in other recreational substances. Can you advise whether safe reintroduction is possible, and what supports or referrals could help me navigate this safely?
- I am struggling with reduced sexual interest or difficulty engaging in intimacy due to symptoms. Who can support me and my partner(s), and are there specialists who can help with this?
Note: While every patient deserves quality of life, not all goals will be achievable quickly, and some may need adjustment. Open discussions with your specialists or support services can help identify what is realistic and support your priorities and wellbeing.
Need help finding a specialist?
If you would like guidance on locating specialists familiar with MCADs in your state or territory, please contact TAMS.
