FAQ'S

What does AOSD stand for?  AOSD- Adult Onset Still's Disease.  Click her for a list of commonly used acronyms such as JRA, SLE etc.

1. What is stills disease in our words?

stills 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, Stills usually hits people in their prime of life, between the ages of 18 and 40.  Stills and SLE are both inflammatory arthritis'.   Both can effect the joints, tissues, organs in an individual..  Mainly the difference in stills 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 stills experience joint destruction.  The cause of Stills 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

2. How rare is it?

The latest figures we have from doctors who research still's is that it occours in approximatly 1 out 100,000 people.  Well when you compare that to the world's population, it means that AOSD occours in LESS than 0.0006 % of the world's population.  This is a rare disease. 

3,. Why are people affected differently and How? with rash or fever etc...?

It is unknown why people respond to medications differently and why people effected with stills 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 stills 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. 

 4: Does it last forever?

  Studies have shown that Stills 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 remissive 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 completly symptom free; however, this usually occurs early on in the course of the disease.  As the person with stills 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.

5: What About Medications

  Medications are often given as a secondary line of medications for those with Arthritis in general.  There are no current studies done on Stills Disease alone as it is not cost effective to study small number of groups for the drug companies.  If a person with stills 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 stills 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. 

6. What is remission? And what are the different kinds?

7. How can family members and friends try to understand?
 

8. Is JRA and Stills the same only that stills in more common in Adults?

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 everyday 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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DISCLAIMER:

The materials and information on this server are intended for educational and informational purposes only. The materials and information 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 website.  Any information used from other websites was done so with permission from each site, with an exception to those of "public domain", whereas we believe any site without a cited reference was a "public domain site" and for our use.  The International Still's Disease Foundation is a non-profit organization.   This page was last updated on June 13, 2002

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