Still’s Disease FAQs
Frequently asked questions about Still’s Disease
- What does AOSD stand for?
- What is stills disease in our words?
- How rare is it?
- Why are people affected differently and How? with rash or fever etc…?
- Does it last forever?
- What medications are used to treat Still’s Disease?
- What is remission? And what are the different kinds?
- How can family members and friends try to understand?
- Is JRA and Still’s the same only that Still’s is more common in Adults?
A: Adult Onset Still’s Disease. View a list of commonly used acronyms such as JRA, SLE etc.
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A: Still’s disease is a disease of inflammation. It can effect the joints, tissues, and organs in the person given the diagnosis. Though it is considered to be an extension in some cases of JRA, in the adult it is closest to SLE (Lupus) in symptoms. Like SLE, Still’s usually hits people in their prime of life, between the ages of 18 and 40. Still’s and SLE are both inflammatory arthritis’. Both can effect the joints, tissues, organs in an individual.. Mainly the difference in still’s is the joint destruction, high fevers and some of the lab test may (such as the ferritin in stills patients and the ANA, Complement factors in SLE). However, not all with still’s experience joint destruction. The cause of Still’s is unfortunately unknown. The cause of Rheumatoid Arthritis, and SLE as well as many other forms of arthritis are still unknown. There are many theories on the causes and the circumstances associated with the onset of all these
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A: Adult-onset Still’s Disease is rare and has been described all over the world. Prevalence is estimated at 1.6 cases per 1,000,000 population.
Seventy-Six percent (76%) onset before age Thirty-Five (35) and less than Nine (9%) onset after age Fifty (50). [1]
[1] Dr. John J. Cush, International Still’s Disease Conference, September, 2012
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A: It is unknown why people respond to medications differently and why people effected with still’s experience an assortment of symptoms. Given time, one may experience the same symptoms as another person. Some people are closely the same in their symptoms and others vary from week to week and month to month. Others may experience much the same symptoms as others, just not at the same time or course of the disease. Some joint destruction can also be associated with medication use, as well as organ destruction. Steroids (though the known life saver of acute flare ups of the disease) can lead to many complications such as joint destruction, diabetes, and others. Unfortunately the person with still’s often ends up taking steroids for an extended period of time. The rash has been studies and is said to be a salmon colored rash appearing on the upper anterior torso, upper arms and upper legs, thighs. The rash also usually does not itch.
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A: Studies have shown that Still’s does go away after a ten year time frame in 35-40% of those that have been given the diagnosis. The fortunate are in this small percentage. There are at times re-missive type episodes in which some people ( not all ) may experience one month to one year or more of either a lesser degree of symptoms or in the rarest of cases, some are completely symptom free; however, this usually occurs early on in the course of the disease. As the person with still’s ages along with the longevity of the disease, the symptoms often come on harder and do not respond to medications as they had in the past. At times the inflammation gets to a point where the medication that one has been taking seems to no longer work. Meaning the inflammatory response of the disease itself is greater than the effect of the medication.
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A: Medications are often given as a secondary line of medications for those with Arthritis in general. There are a few small current studies done on Still’s disease and these are mainly with the anti-tnf, or anti-il drugs or biologics. If a person with still’s does partake in a study, it is usually grouped with other forms of arthritis. Medications vary from Steroids, NSAIDS, Cox2 inhibitors, and Dmards, to medications that protect one part of the body from the effects of the medication that is helping to control the inflammatory response. Many people are often on several different medications at one time. As still’s disease also can affect the organs; some people require heart and lung medication as well as diabetic medications. Pain medication in most cases is also necessary. In the early years, pain medication may be used with the on and off type episodes of the disease.
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A: According t0 a standard DAS Board of rheumatology the criteria for remission is: Absence of active disease activity for preceding 3 months of: Normal ranges of blood work.
No joint inflammation,
No fevers
No morning stiffness,
No fatigue
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A: Become educated. Listen. Go to appointments with the patient if possible. Let the patient talk about their lives with the illness. Understand things can change at a moments notice from day to day. Find a support group.
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A: It is a theory that JRA and Stills are the same. However, it is still unknown. Some people with JRA get better and never have symptoms again. Some with JRA experience a return of symptoms later in life. It is also unknown if an adult that develops stills at a later age might have actually had some symptoms of JRA as a child and these symptoms might have been overlooked or thought to be something else. As our medical world is advancing every day and just as new medications are developed, new disease are discovered. Some of those have been diseases in which were at one time thought to be a part of something else or something else all together.
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