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Adult Onset Still's Disease
Diagnosis of AOSD
While there is no simple test for AOSD, most doctors will make the diagnosis if a person has five or more of the criteria below, including two or more from the first (major criteria) list:
- High fever lasting one week or longer
- Joint pain lasting two weeks or longer
- Abnormal white blood cell count and other blood problems
- Sore throat
- Swelling of the lymph nodes or spleen
- Liver problems
- Absence of rheumatoid arthritis
Occasionally the diagnosis of AOSD may be supported by the finding of soft tissue swelling, bone loss and damage to the wrist, hand, hip, knee and spinal joints. These changes, however, are diagnostic.
Diseases that Mimic AOSD Symptoms
An important part of detecting AOSD is ruling out other diseases that can cause similar symptoms. Some of the prime suspects are:
- Infections such as hepatitis, rubella, parvovirus,coxsackie, EBV (Epstein-Barr virus) CMV (cytomegalo virus) and HIV (AIDS)
- Infective endocarditis (an infection of the heart tissue)
- Lyme disease
- Crohn's disease
- Cancer, including leukemia and lymphoma
- Connective tissue disease, such as SLE (Lupus)
Causes of AOSD
We do not know the exact cause AOSD but researchers are currently investigating a number of possibilities:
The abrupt appearance of high fever, sore throat, rash, lymph node swelling and abnormal white blood cell counts suggest some kind of infectious trigger.
While no particular cause of infection has been found, the rubella (German Measles) virus has been detected in many people with AOSD cases. Researchers have also found some association between AOSD and EB, CMV, mumps, parainfluenza, and other viruses.
- Immune Disorder
- Hormonal Influences
Pregnant women are slightly more likely to come down with AOSD or to have a relapse. On the other hand, if the female hormones associated with pregnancy played a role, we would expect AOSD to be more common in one sex or the other. Unlike lupus or rheumatoid arthritis, however, which are more common in women, AOSD seems to affect both sexes equally.
Treatment and Prognosis
The most widely used treatment for AOSD symptoms is non-steroidal anti-inflammatory drugs (NSAIDs). A good early indication of how well an AOSD sufferer will do in the long term is their initial response to these drugs. Statistically, 20-25% of AOSD sufferers improve with NSAIDs. Many of these find that their symptoms clear up quickly, sometimes for good. NSAIDs are normally taken until 1-3 months after the symptoms are gone.
In particularly acute or severe cases, doctors sometimes also prescribe corticosteroids to address heart, blood, and other life-threatening problems that AOSD can cause. Anti-TNF therapy, aimed at a component of the immune system, may be a promising treatment.
Some AOSD sufferers do not respond well to NSAIDs and go on to develop the chronic (long term) form of the disease. Because corticosteroids have serious side effects, they cannot be used to treat AOSD over a period of years. Instead, depending on the individual case, doctors prescribe drugs such as methotrexate, IM gold, D-penicillamine, hydroxychloroquine and azathioprine. For safety reasons, cyclophosphamide is reserved only for the most difficult cases.
Though not common, AOSD is a serious and potentially debilitating disease that can cause serious damage and other problems to the joints, heart, lungs, liver and spleen. While some AOSD sufferers have only a mild form of the disease that responds well to safe NSAID drugs, others come down with a severe, chronic form that is more difficult to treat that can cause long term pain and disability or even death. While we have a lot to learn about how AOSD works and how to treat it, some progress is being made.
December 15, 2001
NOTE: We regret that we cannot answer personal medical questions.
(13) Comments have been made
My 12 yr old daughter recently past away from this after battling for many years. We tried every new medicine as it came out to ultimately find some relief using Anikinra, we thought we had found the miracle drug! But to our surprise it controlled the outward symptoms as the heart & liver continued to be affected undetected. It is very rare what happened to her but I do believe keeping up on her medications allowed her to be with us a little bit longer. More research is definitely in needin this area we had no answers during our hospital stay of a quick3 weeks before her passing. I wish all you who suffer from this well & pray for healing
Posted Wed, Sep. 5, 2012 at 2:09 am EDT
my older bro had basically all of the symptoms about two weeks ago.. he's 24 years of age.
Posted Thu, Oct. 6, 2011 at 12:12 am EDT
where is the picture of the rash
Posted Fri, Sep. 23, 2011 at 1:32 pm EDT
Does anyone have a "remedy" for the fatique? I have had AOSD for a little over 2 years now and it just seems to be getting worse instead of better. Being tired ALL the time is starting to mess with my work and I can't afford to quit working. Any suggestions or medications that will help? Thank you, Debbie
Posted Thu, May. 26, 2011 at 6:21 pm EDT
I have had 2 attacks of ASOD, the first when I was 14 at which point I recovered before a diagnosis was made. The second time was when I was 18 and I have a much more severe attack. I was in hospital for almost 6 weeks, including a 3 day stay in intensive care and 12 days in an isolation unit whilst a diagnosis was being made. My blood pressure at one point dropped to 48/31, which is why I ended up in intensive care. However, with great care from the team looking after me at the Norfolk and Norwich Hospital in Norfolk (England) I started to recover whilst on a cocktail of up to 13 different drugs at one time - although no one is actually sure if any of these drugs where actually helping or if I just happened to be recovering at my own pace. After 9 months of intensive physio and treatment I was able to start working, and I was able to stop taking a medication about a year after that.
@Upendra, I am sorry to here that your sister is suffering, unfortunately this is a not a disease that is easy to overcome. There is no guaranteed method to treat it and in some cases it is a chronic condition. The best advice I can give is to take it easy, do what the doctors tell you, and if they give you steroids, try not to eat to much!
Posted Thu, Feb. 10, 2011 at 4:55 am EST
My sister is suffering from AOSD. Please tell me how to overcome this disease.
Posted Tue, Jan. 18, 2011 at 10:24 am EST
I was diagnosed just about a year ago. I had a rough few months and then with the use of prednisone and methotrexate started to come around. I still get sore but not nearly as bad. I'm off prednisone now and currently take methotrexate, folic acid and plaquenil. Additionally, I also use fish oil, Vit. D. and calcium.
Posted Sat, Jan. 15, 2011 at 2:48 pm EST
Harry: please write directly to the editor for an answer to this question.
Posted Fri, Nov. 12, 2010 at 8:31 am EST
This is a question for the webmaster/admin here at www.thedoctorwillseeyounow.com.
May I use some of the information from your post above if I provide a backlink back to this site?
Posted Thu, Nov. 11, 2010 at 8:07 am EST
My uncle is suffering from this disease for the past year and a half. After several medical treatments there is no relief.
Is it curable?
Posted Tue, Sep. 14, 2010 at 7:34 am EDT
I got Stills when i was 18, and it lasted for a couple years. It was the worst thing I ever went through in my life, and I really felt like i was not going to make it through the ordeal. I am now 44 yrs. old. The lasting effects for me are an egg-sized lump just in front of my left ankle and loss of motion in my wrists (they no longer bend back). Both give me some pain in the winter months and when the weather changes. My only advice, stay positive no matter how bad things are. It helps tremendously. I am now looking for some way to have the lump on my ankle removed as it is increasing in size. Any insight would be greatly appreciated if anyone has had this done.
Posted Thu, Aug. 12, 2010 at 1:38 am EDT
My mom has had this for about 1 1/2 years already. Is it ok if she takes prednisone medication?
Posted Mon, Jun. 28, 2010 at 2:39 pm EDT
I really want to know the medication of this disease "AOSD.' It's urgent. My uncle is suffering from this for 5 months.
Posted Tue, May. 4, 2010 at 10:05 am EDT