Good clinical practice encourages patients to minimise long-term glucocorticoid overexposure to preserve bone density and prevent the development of glucose intolerance or hyperlipidaemia. However, the absence of a protective cushion of excess cortisol implies an increased risk of adrenal crisis. (White & Arlt 2010) This assumption has been challenged by a leading adrenal specialist, who suggested instead that chronic over-replacement may increase the susceptibility to infection (Allolio 2014). To investigate this, we analysed self-reported frequency of adrenal crises for steroid-dependent patients belonging to support groups within the UK in two surveys, conducted in 2003 (N=483) and 2013 (N=1044), and compared to results. The two surveys capture near-identical aggregate patient backpacker years of post-diagnosis experience; 12.8 years for the 2003 survey and 12.2 years in 2013. Yet respondents in 2013 reported markedly higher rates of post-diagnosis crisis. In 2003, 54% of respondents said they had never experienced an adrenal crisis post-diagnosis, compared to 35% in 2013 (P<<0.0001). Only 12.6% had experienced 4 or more post-diagnosis crises in 2003, compared to 25% in 2013 (P<<0.0001). Daily hydrocortisone doses reduced markedly over this time. In 2003, the mean dose for those who detailed their drug regime (N=440) was 26 mg; 43% of respondents took 30 mg or more daily. In 2013, the mean dose reported (N=888) was 21.5 mg and just 15% took 30 mg+ (P<<0.0001). The proportion taking hydrocortisone increased from 89 to 93%, largely due to the withdrawal of cortisone acetate from the UK market in 2011. The proportion taking prednisolone remained consistent: 3.9% in 2013, 3.6% in 2003. In 2003 only 47% had an emergency injection kit; by 2013, 82% did so. The steroid education offered by support groups means this proportion is likely to be higher than in the wider patient population. These findings emphasize that it is crucial for all endocrine departments to ensure their steroid-dependent patients are educated and equipped to self-manage during episodes of infection or injury, and that they are trained to self-inject when absorption of oral steroids is compromised by vomiting or diarrhoea.
07 Nov 2016 - 09 Nov 2016