When I was first diagnosed with Adult Onset Still’s Disease I had little knowledge of auto-immune/inflammatory conditions. Evidently, as I lay on my back in hospital my mind was consumed with questions! How long will this last, will I ever get better, how will this impact my day to day life, what went wrong?
Because Still’s is so rare, finding good quality, accessible information about Still’s over the past four years has been really hard. A lot of the available literature is overwhelming and often quite clinical in nature. So, I wanted to try and do something about that. Over the next six months I am going to endeavour to collate the information I have found useful and try and make it more accessible to us, the patients. Please note that I do not have a medical background, other than having been sick, and the purpose of these posts are to provide you with information that you can speak to your specialists about or do your own further research. They are generalised in nature. However, if you think I’ve misunderstood anything, please let me know. I want to ensure this content is as accurate as possible.
One of the first questions I want to address is disease patterns. From the literature I have reviewed it seems that there are three typical patterns. The first pattern is monocyclic, or put simply you have one major flare and then go into remission. The second pattern, the pattern I seem to be following, is polycyclic. You fluctuate between periods of high disease activity and remission. The number and frequency of cycles I imagine is unique to each individual and their exposure to triggers. The third cycle, and the most devastating, is the chronic pattern. People experiencing this pattern of disease activity may fluctuate in the severity of their symptoms but they never enter a remission state. People with chronic Still’s also appear to have higher joint involvement (arthritis leading to joint deterioration).