Discussion Board

Welcome to the discussion board of the International Still's Disease Foundation.
Please list here any and all questions or topics which you would like to discuss concerning Still's Disease.

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No SubjectAndrew, Tue May 24 03:14
Anyone try Kinteret treatment yet, ive had stills since i was 21, im 33 now, fevers surpased 105degrees last week



  • No SubjectAnonymous, Mon Aug 17 11:04
    Anyone from india who has tried ayurvedic medicines?



    Six year ago i was diagnosed for still's disease after i had my first flare. it took one month for me to be diagnosed which is fairly quick from what i hear. the first thing i did was go online for information and came to this site. i must say it got me depressed at first but then i realized that most stories here are ... more



  • No SubjectAnonymous, Sat Aug 15 04:55
    HI I AM MANOJ FROM INDIA.I AM DIAGNOSED WITH STILLS DISEASE 10 MONTHS BACK.KINDLY ADVICE...ABOUT THE TREATMENT



  • When will the pain endsana, Sat Feb 21, 2015 18:49
    I am a college student and fed up with the pain, I could not live with it,I have done everything , and spend money ordination but did not heal, how long I will stay for this case . Please tell me



  • Taper off of prednisone and Kineret 100%?baby_girl7373, Sun Mar 30, 2014 22:32
    After I got off of prednisone, my body crashed sending me to the ER. I take Kineret everyday now and find myself taking low doses of prednisone every other day. Has anyone been able to get off of prednisone completely? Has anyone been able to get off of both prednisone and Kineret completely? Thanks!



  • Best Doctors?baby_girl7373, Sun Mar 30, 2014 22:27
    Who have been your best doctors in the treatment of Still's Disease. I'm desperate and considering doing some real traveling soon. Thanks!



  • Mayo Clinicbaby_girl7373, Sun Mar 30, 2014 22:25
    I saw info on Youtube about someone being treated at the Mayo Clinic for Still's Disease and they have resumed the life they had before having Still's Disease. Just wondering if anyone here has been treated there and what was the outcome in terms of medication given. I'm starting to think prednisone and Kineret are... more



  • Need info on doctors pleasebaby_girl7373, Sun Mar 30, 2014 22:23
    Do you know any good doctors in New York and/or Georgia that have experience in the treatment of Still's Disease? I travel often between the two states. I am looking for a rheumatologist who is knowledgeable and has experience. I don't want to be a guinea pig. Thank you!!!



  • Still and acneMichael , Wed Jun 19, 2013 13:20
    Hi my names Michael and I was diagnosed with still four years ago. I take anakinra shot whenever I have a flare up, and I was wondering if anyone else with stills deals with cystic acne? If so how do you deal with it, I hate it! Nothing seems to work!!



  • helpradhika, Thu Feb 28, 2013 11:01
    Hi guys...my name is radhika and i am a 23 year old college student..i was diagnosed with stills 7 months back and have been on steroids since then..the pain is still there and i am not able to get my life back on track..it gets really frustrating..i just wanted to ask you guys that approximately how much time will it ... more
    • Hello!Liz, Fri Mar 1 01:04
      • helloradhika, Fri Mar 1 01:36
        • :DLiz, Sat Mar 2 00:58



  • Enbrel/ side effectsCaitlin, Tue Feb 28, 2012 22:27
    Hey all! Heres my issue/question: Have been on pred for about 6 months and my dr doesn't want me on it anymore, because I have already been on it. Even though it works wonders, it damages your body in the meantime. & the weight gain is not helping anything either for a young woman. :( She was suggesting Enbrel. I was... more



  • IGg infusions - repeated sinus infect.Babs, Thu Feb 2, 2012 08:29
    Have been diagnosed with Still's for 20 years. Last 17 yrs treatment that has worked well has been Prednisone, 10 mg and Methotrexate 25 mg/ml, 1 ml sq weekly. However, developed repeated serious sinus infections past 2 years. Drs. now trying IGg infusions for that. Rheumatologist has removed MTX from my med list. Now ... more



  • management of still's diseaseConcepta, Wed Feb 1, 2012 08:00
    hi,i have recently been diagnosed with this disorde.can anyone share advice particularly on proper diets for its management?thanx



  • ActemraA, Sun Jan 29, 2012 07:19
    Hi All. My husband has broken through Humira and will be out on Actemra next. I can read all the information I like on the net but I think the real information comes from you guys. If anyone would like to share their personal experiences with it that would be great. Good and bad... better to be informed I think.
    • Actemrareyncg1, Thu Feb 2 00:35



  • Ilarismom, Thu Jan 12, 2012 09:58
    Hi, Anyone been on Ilaris? Good results? Problems? My daughter has to go off Kineret. I hear it hasn't been FDA approved yet for Still's, we are waiting for insurance auth. Mom



    Joint reliefAnonymous, Mon Jan 2, 2012 01:11
    Has anyone bought/used any of the joint relief gels/drinks they advertise online/ads? Was curious to see if they worked for anyone with Stills.



  • Pred weightAnonymous, Tue Dec 27, 2011 02:02
    Anyone have any tips on how to lose/maintain weight while being on Pred? This drug is the best and worst. :( It feels like I am never full/and will continue to eat. Have gained some pounds after losing 20 while being off it and do not want to go back to my previous weight. Any help? - question focused on any women on... more



  • Pred Anxiety Anonymous, Wed Dec 14, 2011 16:47
    Has any had any problems regarding social/anxiety problems while being on Pred? I was on Pred for a while years ago and am back on it and have experience different types of symptoms. Pred works wonders right away but it is one hell of a drug that causes a lot of side effects. If so- what did you do to calm the effects ... more



  • Still's and elevated liver functionmom, Fri Dec 9, 2011 05:44
    My 19 yr old daughter started taking Kineret twice a day about a month ago. Her liver enzymes are now elevated. One thought is that it's related to the Kineret the other is its part of the Still's disease. She stopped the night time dose of Kineret for 2 nights and by the 3rd day had muscle aches and a fever. Has... more



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