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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Newly diagnosed — MMN, Wed Jul 1 18:06
Good evening. I am newly diagnosed with Still's.Diagnosed after about 3-4 weeks of symptoms. Started with heel pain, then, fever spikes twice daily, ankle swelling, toe joint pain, erythema nodosum,salmon colored rash (fleeting) and night sweats. Elevated ESR at 67, elevated CRP at 45. All...and I mean all other tests ... more
- Re: Newly diagnosed — Anonymous, Thu Jul 2 10:11
- Newly Diagnosed — Ellen, Thu Jul 2 06:38
- Rheum appt — MMN, Thu Jul 2 17:31
- Rheum appt — Ellen, Thu Jul 2 18:42
white blood count — anonymous, Tue Jun 30 16:31
Hi, everyone, I was at my checkup and my rhuemy told me that my white blood count is elevated and has been for the last three labs. My other counts are down or normal, but the white count has been up. Has anyone ever experienced that? I have an appointment now with the hemotologist to give another look at the labs.... more
- I did — bccmail, Thu Jul 2 06:19
- Whit blood count — Ellen, Wed Jul 1 07:42
Help communicating with doctors? — Tryst, Fri Jun 26 03:33
Hello, I'm new here and looking for some advice on talking to my doctors about treatment for Adult Onset Still's Disease. I'm 25 years old and have been dealing with this for over 6 years, but just heard of AOSD a few weeks ago when a very close family friend who is a doctor, and another very helpful doctor at the ER... more
- Re: Help communicating with doctors? — Anonymous, Sat Jun 27 00:20
Live a normal Life??? hope so — Emma, Thu Jun 25 04:11
I was told that i have had stills since i was 4 yrs. They thought it was arthritis then it went away, at 9yrs i got legonella, as i was recovering from that i got "Arthritis" again, then it went away again. have lived a normal hard working, fit, sporty life, I am now 23, had a 'big' weekend drinking for mates... more
Rituxan/Orencia — Mary, Tue Jun 23 10:25
I am looking for some advice, I go back to the Dr. in just a few days and I need something new. He really wants to try Actemra, but it is not approved. I am wondering about Rituxan and Orencia and what people's experiences have been. Please, if you have taken either and have had good results, help me figure out which... more
- Re: Rituxan/Orencia — Anonymous, Wed Jun 24 09:29
Skin Damage — Daughter, Sun Jun 21 21:09
My mother was diagnosed with adult onset Still's disease over ten years ago. She now has severe skin damage and bruises exremely easily. My questions are: Is this common among individuals with still's disease? Also, is the damage a result of the disease or the medication that she has been taking continuously?
- Skin Damage — Ellen, Mon Jun 22 08:36
Prednisone — A, Fri Jun 12 23:11
Hi. Just interested in people's experiences with prednisone. Has anyone out there been taking high doses of it for a long time? 30mg a day appears to be the only thing that keeps my husband's stills quiet. How long can someone keep taking it? A
- Prednisone — Rachael, Fri Jun 26 12:31
- reducing prednisone — Margaret, Sat Jun 27 11:19
- Prednisone--how long? — Margaret, Wed Jun 17 16:32
- prednisone — cyberdon, Sat Jun 13 08:04
- Prednisone — mom, Sat Jun 13 06:40
- Pred. — Maria, Thu Jun 18 17:04
- Kineret — caroline, Mon Jun 29 07:46
- Improvement with Kineret — mom, Sun Jun 21 08:08
- Re: Improvement with Kineret — Maria, Sun Jun 21 08:54
Getting off Kineret — mom, Fri Jun 12 09:19
My son 16 was diagnosed for Still a year and a half ago and his treatment included 60 mg of Pred. tappered down to a minimum doze till the end of Dec. 2008 and daily injection of kineret in combination with Methotraxate which he still continues. He blood test reports have been fine and he is free of symptoms except... more
- Getting off Kineret — caroline, Wed Jun 17 14:29
- Getting off Kineret — mom, Thu Jun 18 06:07
- getting off kineret — karen, Mon Jun 15 09:27
- getting off kineret — mom, Tue Jun 16 08:41
- getting off kineret — karen, Tue Jun 16 08:49
- getting off kineret — Kevin, Tue Jun 16 00:18
- getting off kineret — Karen, Wed Jun 17 07:39
Stills — Diana, Thu Jun 4 16:41
I have a question. I was diagnosed with Stills 20 years ago. Been in remission mostly except when I get tired or stressed. Now I have nighttime chilling sweats, rash when upset, joint pain, headaches, rapid weight loss. I do not know if it is Still's returning or if so, what type of Dr to go to. The Dr I had 20 years... more
- Re: Stills — Anonymous, Fri Jun 5 09:38
- Stills — Ellen , Fri Jun 5 06:35
No Subject — Ali from England, Thu Jun 4 15:47
Hi, I am 30 years old I was diagnosed with still's disease in November 2006 having been unwell for a long time with fevers, sore throats, joint pain and stiffness, rash and extreme fatigue. I was on methotrexate but had to come off it as it stopped working. I am now on 7.5mgs prednisolone daily, sulfasalazine and... more
- Re: No Subject — Anita from Los Angeles, Wed Jun 17 16:59
- Ali from England — Ellen , Fri Jun 5 06:46
Help — Tony, Wed Jun 3 05:19
Hi. I am so confused about stills and the doc isn't much help. He doesn't explain anything and I don't know enough to know what to ask. I was diagnosed 6 months ago. My stills seems to hit me hard in the pericardium pleura. When I was diagnosed they put me on 20mg methotrexate and prednisone. That worked for awhile... more
- chest pain — gary, Thu Jun 4 02:14
- Re: Help — Anonymous, Wed Jun 3 10:32
Homeopathic Remedy — A, Tue Jun 2 05:45
Hi. Just wondering if anyone out there has had success with homeopathic remedies? I have been reading about homeopaths using low levels of antibiotics (minocycline) to treat RA. The idea being that, in auto immune disease, the body is not attacking itself but attacking a bacteria that it it has turned on. The claim is ... more
- antibiotic therapy — sally, Wed Jun 3 05:39
Remission.... why can't I stop worrying now? — JAN, Mon Jun 1 22:39
It took four years, but my daughter is now completely off all meds and doing well. It has been almost a year now and I can not seem to let go of my fear that it will some day show up again. I hide my fears from my family and friends because I know this is something out of my control and it is best to just focus on the ... more
- Thank you — JAN, Wed Jun 3 16:53
- Remission worries — Cynthia Rielley, Tue Jun 2 10:32
- Remission...can't stop worrying — Ellen York, Tue Jun 2 08:14
- Worry — caroline, Tue Jun 2 07:54
- Worrying — A, Tue Jun 2 06:08
- Remission/worry — Margaret, Tue Jun 2 07:35
emails — Diana, Fri May 22 17:56
I do enjoy all the member's messages and prefer to read them on the board. Could you please not forward all the emails to me as my email can not hold them all? Thanks, Diana Cruze
No Subject — daisy, Tue May 19 23:15
Hi. This is my first time to this site. I am curious about the rashes I've heard described with this disease. I was diagnosed with another inflammatory disease, however, many of these diseases share characteristics and are hard to diagnose (as I've been learning the hard way). I get transient rashes on my chest that... more
- Rash (No Subject) — Ellen, Wed May 20 07:36
Delaware support group — Leon howard, Sun May 17 10:20
Visit my facebook group. I am starting a face to face meeting in Sussex county Delaware. http://www.facebook.com/home.php?#/group.php?gid=181017965011&ref=nf
can't get answers — Frustrated, Wed May 13 16:28
I have been suffering from Still's for 4 1/2 years. I have been hospitalized 3 times and have missed months of work. I have every symptom of Still's. Until November my doctors never considered anything other than Lupus and since I didn't have a positive ANA they said it must be a virus. In November I was finally... more
- Re: can't get answers — possumkehoe, Sun May 17 14:58
- can't get answers — Ellen, Thu May 14 07:36
- contact for doctor info — can't get answers, Thu May 28 06:49
- Contact for doctor info — Ellen, Thu May 28 08:09
No Subject — Anonymous, Tue May 12 23:03
i was diagnosed with stills disease when i was 23. i have had stills for just over 3 years. i have been to hell and back. having my son and trying to function with crippling joint pain, my marraige failing because of my disease. but it does get better. i only take 5mgs of pred once a day folic acid twice a week and... more
Periods — Anonymous, Tue May 12 06:57
This is one for the ladies - I have had Still's for 3 and a half years, and for the past year i have been symptom free and on a low dose of pred (3.5mg), 10mg mtx, 5mg folic acid and hydroxychloroquine once daily. Despite a lack of Still's syptoms (i.e. no rash, fever or arthritis) I have not had a period for 4 months ... more
- Re: Periods — Anonymous, Wed May 20 06:06
- missed periods — phelps358991, Tue May 19 14:19
- Re: Periods — Kim F, Fri May 15 03:28
- Re: Periods — Anonymous, Tue May 12 16:33
- Re: Periods — Catherine, Wed May 13 01:06
- Re: Periods — Anonymous, Thu May 14 06:26
Stills Disease — Kim Farquhar, Wed Apr 29 21:21
I am a 50 year old Australian woman diagnosed with Still's Disease at age 5, so I have known this disease for 45 years. I was affected mainly in my legs as a child and had to learn to walk again at 8 with hospitalisation for months at a time. There was little known about this disease a million years ago when I was... more
- Aussies with Still's — Janet, Thu May 28 06:09
- assies with still's — janet, Thu May 28 06:06
- Re: Stills Disease — Anonymous, Tue May 12 23:10
- Re: Stills Disease — Anonymous, Wed May 13 08:23
The materials and information contained in this message board are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form.
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