Patient Comments: Still's Disease - Treatment

What was the treatment for your still's disease?

Comment from: astrid twidale, 65-74 (Caregiver) Published: November 11

I was 19 years old when my fevers started doctors did not know what the problem was. I had an infection from my heart muscle and was very anemic. I got a blood transfusion and was treated with cortisone; I was free for years. In 1977 the fevers came back again, with enlarged liver and spleen, tiredness and night sweats. I was in hospital for 6 weeks and got better, but no diagnosis and no medication. In 1982 I had small fevers again after my children. From time to time I always had small fevers with enlarged spleen, liver, and glands, and iron was short. In 1987, after lots of tests I was put on Meticorten (cortisone) for 6 years. My last small fever I had in 1994 after I moved into my new house. I stopped cortisone end of 1994. I was the 43 years old. I am now 65 and have been in perfect health since 1994. When my son started when he was 14 years old and much later was told he got still's disease, then only I got to know what I had. I hope that he will be cured as I am.

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Comment from: MadMan, (Patient) Published: October 30

Methotrexate seems to have helped my adult onset Still's disease at age 62 which made it difficult to diagnose. Maybe my acute phase is not as severe as others but I find walking in the park helps me to relax and stay mobile. I stopped working because of illness and age but fortunately we own our own apartment and my younger wife works.

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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: Mona, 55-64 Female (Patient) Published: November 24

I am 55 years old and was diagnosed with Still's disease 9 years ago after many tests. I was unable to walk or even brush my teeth or hold a washcloth to shower. I had fevers in excess of 104 degrees daily for over 2 months and up to 102 degrees for four more months. I am still unable to work a full day and suffer from extreme exhaustion quite often. My pain level spikes to unbearable at times and is mostly in my legs and feet, but often affects my wrists and other body parts. I have been told repeatedly that I have no rheumatoid factor and that my sedimentation rate and CRP are normal. That is normal with Still's, but no one wants to listen. Your ESR and CRP can be normal while you suffer from severe swelling and pain due to Still's disease. Exercise does, indeed, help me to feel better about myself. Since contracting Still's Disease, I have also contracted Raynaud's disease and have difficulty holding on to things many days. My hands are two-toned and ice cold. It is hard to move on many occasions, but I refuse to give up. I stopped taking prednisone and methotrexate because they were causing severe bone pain. Now I take ibuprofen for pain and deal with my pain as best as I can. I have filed for SSI (supplemental security income); I am waiting to see if I will receive some help.

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