Patient Comments: Still's Disease - Treatment

What was the treatment for your still's disease?

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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Comment from: TheJellybean212, 19-24 Female (Patient) Published: June 29

Last year, I came down with a severe sickness, that my doctor thought was pneumonia. It lasted around 5 weeks, and I finally went back. After being admitted, they thought it was lupus. After that, I was seen by a rheumatologist and told I had adult onset still's disease. I've had surgery to repair my left wrist, and I am kept on meloxicam for relief of the arthritis.

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Comment from: 35-44 Female (Patient) Published: May 10

I was diagnosed with Still's Disease in January 2012. I was a full-time college student at the time. I got very ill one day, and thought I was catching the flu. It persisted for too long so I finally went to the hospital after about two weeks of suffering. I went to one hospital they gave me medications for fever and pain – and discharged me! They said they thought I had lupus and too see a rheumatologist. I went home and the very next day got so sick I thought I was dying. Finally I called my sister and her and my mom came and got me and took me to another hospital. The doctors there admitted me immediately and after 11 days of intense studies and tests I was diagnosed with Still's Disease and put on Prednisone and anti-itch medications. Today I feel great. I'm so thankful for my doctors at OU Medical Center they saved my life! Thank You!

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Comment from: mishy, 45-54 Female (Patient) Published: June 15

When it first started I was treated with aspirin which worked well for many years to control the flares. Asprin stopped working so well and I have been treated with other nonprescription anti-inflammatory (which have not worked well at all) and some prescription ones too. Sometimes I have been treated with steroids.

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