Patient Comments: Still's Disease - Prognosis


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Comment from: jaldbl, 55-64 Male (Patient) Published: September 08

I was diagnosed with adult onset Still's disease in November 2015 after 3 ambulance rides and three hospitals. I was 57 years old at that time. I thought I had the flu. When I passed out and appeared to have stopped breathing my wife called an ambulance and my challenging journey began. Symptoms are extreme tiredness, re-occurring rash, fever, sore throat, and pain all over. Eventually my hands and feet began to swell. After testing for everything you could think of I was diagnosed and treatment began. After 2 1/2 weeks in hospital and trying Kineret (anakinra), I finally started feeling some relief. I was off work two months. During this 2 1/2 weeks, I lost a total of 30 lb. I did a daily injection for 14 months and was able to do every other day injections. In June we attempted to reduce injections to every three days. This has been unsuccessful and I recently had a flare up and now I am back on daily injections. I am so frustrated and concerned how I will be able to afford this medication when I am no longer working and do not have medical insurance through work. My insurance company is being charged USD 3,775 for 28 injections (a one month supply). Without this I will not have a life. I understand needing to recoup cost for research and I am very grateful this drug was created, however what good will it be if I cannot afford it or it eats up what money I have saved in my retirement. My future is frightening to think about.


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