Patient Comments: Still's Disease - Treatment

What was the treatment for your still's disease?

Comment from: Lucy1, 45-54 Female (Patient) Published: July 24

I have Stills disease. I became ill in 2011 with high spiking fevers at night and drenching sweats. I also had myalgia and was very lethargic. After 2 months I lost vision and fainted. In the emergency room I was admitted to a wonderful teaching hospital and in 2 weeks was diagnosed. I have been on many medicines but the best regimen is Actemra and methotrexate. Actemra is a fantastic drug.

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Comment from: Frank B, 45-54 Male (Patient) Published: June 19

I was diagnosed with Still's disease in October 2003. After 10 months of severe fevers, rash, night sweats, weight loss (over 30 lb.), 2 stints in the hospital, a bankruptcy, my wife left me, methotrexate, prednisone, CellCept, Enbrel, Remicade, gold shots, and countless other drugs, I finally got to Kineret. Symptoms went away almost instantly. I took 1 shot a day for nearly 5 years and became fully functional with no side effects. Then I took my last shot in November 2009. No more symptoms at all till April 2014. It then came on with a vengeance. Fevers, able to hardly move, big time rashes, and night sweats. Now they want to try Actemra. I am on prednisone right now but it has little effect. I still miss work about 50% of the time. Hopefully it is approved soon.

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Comment from: KJean, 45-54 Female (Patient) Published: October 08

I have adult onset Still's disease. I was diagnosed nine years ago after months of doctors being stumped. For me, Still's is chronic. I've been on prednisone all nine years (now down to 20 mg.), 30 mg. methotrexate, and 2 daily shots of Kineret but I still get fevers almost daily, sometimes twice, severe fatigue, and muscle and joint pain. I've tried and failed Enbrel, Cimzia, Actemra, and Humira. It is a life changing and destroying illness - I had to drop to part-time work, and then file for disability two years ago. Filed for bankruptcy. I have lost much of my mobility.

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Comment from: pebbles, 35-44 Female (Patient) Published: November 16

I have had pain and fevers with a rash for almost 10 years. Most doctors thought I was crazy because my Rheumatoid Factor always came back negative as well as the ANA test for Lupus. I was missing tons of work each year but I was finally diagnosed last year with Adult-onset Stills. I am being treated with Plaquenil and Methotrexate. I have been 90% better after receiving medications. Hardly miss any work now and can now pretty much function normally. Thank goodness!

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Comment from: Mary, 55-64 Female (Patient) Published: June 13

I was diagnosed with Still's disease in 1960. As a baby, I suffered from mercury poisoning. As a treatment, I was prescribed large doses of disprin, and my joints were wrapped in thermogene wool.

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Comment from: CocoCookie, 19-24 Female (Patient) Published: May 13

It took 10 years and many different specialists, doctors and different hospital stays lasting anything from a few days to a few months to diagnose my still's disease. It started when I was 8 and got so bad that it broke three of my vertebrae. The doctors wrongly treated me for juvenile arthritis and sent me home. I was on steroids for a year and this treated my fevers. After going to a private specialist two years ago I was diagnosed with still's disease. I have had it for roughly 13 out of my 19 years in total.

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Comment from: tortured, 45-54 Female (Patient) Published: February 25

Still's disease disease has changed my life. I can't be as active as I was which has cause me a lot of depression. I try to think positive but it's very difficult. The steroids don't help they add extra weight for your body to carry. If my body is hurting and joints are on fire I really don't need extra weight. My body is fighting with me and its not letting me win but I am not giving up. I can be working and my joints just lock. It's a life changing disease.

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