Patient Comments: Still's Disease - Treatment


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Comment from: DS, 55-64 Female (Patient) Published: February 18

I had daily spiking fever and joints that seized, an agony to move. I also had loss of appetite and severe weight loss. Difficult to tell if the pain was in joints or muscles. I was hospitalized when 7 (1967) and diagnosed with rheumatic fever. I had 6 months bedrest plus 7 years penicillin and recovered. Hospitalized aged 17 for 5 weeks and diagnosed with atypical Still’s disease. Prednisone was given and I had overnight recovery. I was hospitalized again twice when 24 and given steroids again, for 10 years. No relapse since. I have heart valve regurgitation.

Comment from: RPN, 19-24 Male (Patient) Published: July 08

I was put on 60 mg of prednisone for Still’s disease. To combat the side effects of prednisone I was also put on an antibiotic, calcium, and vitamin D. Turns out I was allergic to the antibiotic I was taking so I was taken to the emergency room by ambulance and got a bad stomach infection. My rheumatologist then had me quit my prednisone cold turkey and put me on Kineret. I've been on it for one month now with no side effects! It's a miracle drug for me.

Comment from: Mamahoges, 55-64 Female (Patient) Published: August 07

I was diagnosed with adult-onset Still's disease (AOSD) at age 56. I am now 63. I am currently taking Ilaris 150 mg every 4 weeks. It is my miracle drug. It has allowed me to function. I walk with a cane. Very painful to walk. I get a very bad pain in my lower back and I am only comfortable sitting or lying down. Daily I take prednisone. Doing a taper now, 13 mg for 8 weeks, 12 mg for 8 weeks, etc. I also take folic acid, hydrocodone/acetaminophen 3 times day, and gabapentin for neuropathy. I am doing much better than a lot of people with AOSD.

Comment from: Me, 55-64 Female (Patient) Published: June 27

I have been for a year and a half on 60 mg prednisone, a taper of 1 year and now Humira and sulfasalazine for Still's disease.

Comment from: Sarah, 19-24 Female (Patient) Published: May 15

Last year (2017 - I was 21) I was admitted to the hospital with super high fevers and extreme debilitating joint pain in my knees. While in the hospital for five weeks, it was found out through every test imaginable, I had Still’s disease, an enlarged liver and spleen, pericarditis, pleuritis, fevers for 4 of the 5 weeks and super high ferritin/white blood cells/C-reactive protein. The doctor first put me on naproxen; it helped my arthritis but didn’t quite cut it. Then he tried prednisone for a year; never again, too many side effects. Then she put me on methotrexate - more side effects; and now I’m happily on Kineret for both pain and inflammation. I lost 45 pounds in the hospital but I’ve gained it all back in the past 16 months since then. Don’t lose hope if you have this disease! I find getting a good night’s rest, eating healthy and keeping stress to a minimum really help with how you feel!

Comment from: monesmartgirl, 55-64 Female (Patient) Published: April 24

I was diagnosed with adult onset Still's disease (AOSD) in 1990, after 21 days in the hospital isolation ward. I had been sick in bed with flu-like symptoms the previous 2 weeks, but went to the emergency room when breathing became painful. I was admitted immediately when my temperature was found to be 106. I continued to experience FUOs (fevers of unknown origin) that spiked to 106 degrees twice a day, rash, severe joint pain and difficulty breathing for the majority of 3 weeks. I was heavily sedated (Talwin) to control the migrating joint pain and hooked up to alarms that sounded whenever my temperature spiked. Nurses would come, throw me into a chair, lay down an ice blanket, hustle me back into the bed, cover me with a second ice blanket, then leave. I would come to shivering from cold and had to hit the call button for help. I saw 10 specialists during the first 2 weeks. They took so many blood samples that my veins collapsed, causing the trauma team to be called to assist. On day 18 I was diagnosed with Still's and given a large dose of steroids. Two days later I was well enough to go home and was discharged from the hospital. Before I left the hospital, I was informed that the Still's disease would take approximately 4 months to settle into my body causing joint pain that would, most likely, confine me to bed for that time. I was prescribed 4 or 5 different medications to take during the convalescence, but can only remember prednisone, methotrexate and Lortab. (NSAIDs, Plaquenil and gold injections came over the next 2 years). The prednisone caused me to gain 40 lb. When my 6th round of bloodwork revealed elevated liver enzymes from the methotrexate and Plaquenil related retina damage was suspected, the doctor took me off the Plaquenil and methotrexate and suggested gold shots until my liver healed enough to resume the methotrexate. That's when I chose to discontinue all the medications that were causing side effects that needed more drugs to manage. I decided to keep taking Lortab, as it was the only medication that actually helped me. I've been able to live a fairly normal life just by taking two to four, 10 Lortab (hydrocodone/acetaminophen 10 - 325mg) almost every day (some days I don't need any). It is the only drug that has given me zero side effects, even with prolonged, almost daily use for 30 years. But now, the doctor is refusing to keep prescribing my pain medication! He's forcibly trying to wean me off what he views as my dependence on Lortab by cutting my monthly intake from 4 a day, to two, then zero after 2 months.

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.

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.

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.

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.

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.

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.

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!

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.

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.

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.

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!

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.