Patient Comments: Still's Disease - Treatment

What was the treatment for your still's disease?

Comment from: Jane, 45-54 Female (Patient) Published: March 18

I'm a very active business executive who travels internationally on a monthly basis. I work out daily and eat healthy. I went on a business trip to the Middle East and returned with flu like symptoms. I had unusual severe body aches each day of my business trip. I called the ambulance the day after I returned and had severe issues breathing. I was hospitalized for 5 weeks with the onset of still's disease which included pericarditis, myocarditis, pleurisy, rashes, nightly fever, night sweats, and TMJ (temporomandibular joint disorder). Lastly, I had severe weakness and could barely walk and lost 25 lb. It has been 5 months and I am feeling much better but I am not able to work yet. I am on methotrexate, Kineret, prednisone and narcotic pain medications. I am working out and eating healthier and avoiding inflammatory foods and using diffusing anti-inflammatory essential oils like Rosemary. I am not back to myself and don't think I will ever be the old me. My nights and mornings are still hard and I have pleurisy and difficulty breathing sometimes. Perhaps this is nature's way of telling me to stay home with my family and slow down! I get the message! I am happy to be alive as the onset caused severe cardiac dysfunction that should have killed me. Take one day at a time and smell the flowers folks! Hug your kids a little tighter and be kinder to others and yourself! We are in this together!

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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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Still's Disease - Symptoms and Signs Question: What symptoms and signs did you experience with your Still's disease?
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