Box 5.

Recommendations relating to management: specific conditions (questions 28 to 35)

  • 28. Patients with cardiac symptoms should be advised to limit their heart rate to 60% of maximum (usually around 100–110 beats per minute) and investigated with at least electrocardiogram and echocardiogram before taking up exercise. Supervised exercise testing should be considered for this patient group as they may have perimyocarditis and exercise carries risk of arrhythmia and worsening cardiac function11 (strongly agree = 16, 49%; agree = 14, 42%; neither agree nor disagree = 2, 6%; disagree = 1, 3%; strongly disagree = 0, 0%).

  • 29. For autonomic dysfunction including postural orthostatic tachycardia syndrome (PoTs), consider first increased fluids, salts, compression hosiery, and specific rehabilitation12 (strongly agree = 18, 55%; agree = 13, 39%; neither agree nor disagree = 2, 6%; disagree = 0, 0%; strongly disagree = 0, 0%).

  • 30. If PoTS and no or inadequate response to non-pharmacological therapy consider beta-blocker, ivabradine, or fludrocortisone (with blood pressure and response monitoring) (strongly agree = 18, 55%; agree = 13, 39%; neither agree nor disagree = 1, 3%; disagree = 1, 3%; strongly disagree = 0, 0%).

  • 31. In patients with possible mast cell disorder, consider a 1-month trial of initial medical treatment and dietary advice. Higher than standard dose of antihistamines are commonly used for this indication. If partial effect, consider adding second-level treatment such as montelukast, as well as referral to allergy or immunology specialists13,14 (strongly agree = 17, 52%; agree = 14, 42%; neither agree nor disagree = 2, 6%; disagree = 0, 0%; strongly disagree = 0, 0%).

  • 32. Be aware that adverse drug reactions are more common in patients with mast cell disorder, for example, to beta-lactam antibiotics, non-steriodal anti-inflammatory drugs, codeine, morphine, or buprenorphine (strongly agree = 17, 52%; agree = 13, 39%; neither agree nor disagree = 3, 9%; disagree = 0, 0%; strongly disagree = 0, 0%).

  • 33. For breathing pattern disorder, consider specialist physiotherapy and/or using alternative therapies such as pranayama breathing and meditation (strongly agree = 12, 36%; agree = 14, 42%; neither agree nor disagree = 4, 12%; disagree = 3, 9%; strongly disagree = 0, 0%).

  • 34. In patients expressing distress, significant low mood, anxiety, or symptoms of post-traumatic stress disorder, consider mental health assessment (strongly agree = 20, 61%; agree = 13, 39%; neither agree nor disagree = 0, 0%; disagree = 0, 0%; strongly disagree = 0, 0%).

  • 35. Over-the-counter supplementation is common, including vitamin C, D, niacin (nicotinic acid), and quercetin. Be aware of significant drug interactions, such as with niacin or quercetin (strongly agree = 21, 64%; agree = 10, 30%; neither agree nor disagree = 1, 3%; disagree = 0, 0%; strongly disagree = 1, 3%).