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Adult Onset Still's Disease
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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:(7)

Major AOSD Criteria
  1. High fever lasting one week or longer
  2. Joint pain lasting two weeks or longer
  3. Rash
  4. Abnormal white blood cell count and other blood problems


Minor AOSD Criteria
  1. Sore throat
  2. Swelling of the lymph nodes or spleen
  3. Liver problems
  4. Absence of rheumatoid arthritis

Joint and Muscle Change
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)
  • Tuberculosis
  • Lyme disease
  • Ehrlichiosis
  • Sarcoidosis
  • Hepatitis
  • 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:
  • Infection
    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
  • Genetics
  • 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.(10)

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.

Summary
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
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Readers Comments
(23) Comments have been made

Maureen ludwig
How about an update. That was written in2001
Posted Wed, May. 21, 2014 at 12:49 am EDT
 
helen
I have had stills for 30 years from childhood now in my 40s my mum died of lukema and I wonder now if its linked
Posted Thu, May. 1, 2014 at 7:26 am EDT
 
Charlotte
I was diagnosed about 13 years ago with AOSD and after trying all the above meds, my RA doctor put me on Plaquinil, which is normally used for malaria and since then I have only had four attacks of AOSD, which included high fever, heavy/drenching night sweats, horrible shoulder and knee and hip pains, fatigue, and rash. It never flared up as badly as it did the first time. My rash is usually above my waist (front and back).
Posted Thu, Apr. 24, 2014 at 1:04 am EDT
 
Anonymous
Hi Valerie, I relate to so much of what u said. I wAs diagnosed with OASD back in 2011 after months and months of testing and hospital stays, blood work, ct and MRI tests and many X-rays. My fevers would spike over. 103.0 nightly. The fatigue and constSnt joint pain robbed me of having my job that I loved so dearly and had to resign. This disease is so unpredictable and I never know from day to day how I'll feel. There are days the stiffness keeps me from doing anything. The joint pain is unbearable. I take methotrexate, prednisone, norco, cymbalta and lyrica ing with meds for my fibro And chronic migraines. I also have issues with uti infections. Winter is the most difficult . I was hospitalized four times . I too have filed for ssi. I got denied twice and now have a lawyer and finally have a court heAring for May 8 th. Along with all the meds I now have two ulcers because of the 800mg of the ibuprofen. I now have issues with the fatigue and constant joint pain. I admit I wAs in denial. I wAs 38 when all this began and now I'm 41. I've become distant and depressed. I'm now anxious awaiting my hearing. I was wondering did u obtain a lawyer too? I'm here if u need to vent. I know it helps me to journal. I wish u the best. My email is [to protect privacy TheDoctor does not put up emails] if u wouldumr to chat. Best wishes . Try, Valetie
Posted Mon, Apr. 7, 2014 at 2:08 am EDT
 
LAMISA
MY SISTER IS SUFFERING FROM STILLS DISEASE IN 1 MONTHS.SHE WAS HOSPITALIZED FOR 2WEEKS.SOMETIMES IN MORNING AND EVENING RED RASHES ARE COMES.SHE FEELS PAIN BADLY.SHE CAN NOT MOVES HER FINGERS. DR. SUGGESTS SOME MEDICINES BUT DR. SAYS THAT SHE WILL BE GOING FAT FOR MEDICINES.PLEASE HELP ME HOWEVER.PLEASE...........
Posted Thu, Dec. 12, 2013 at 4:08 am EST
 
Valerie Hill
I was diagnosed with AOSD in Feb 2012 and till this very day Oct 22, 2013 i still have this disease and i have it chronically with high fevers twice a day, sometimes a sore throat, red.rashes, stiffness. I was hospitalized for a week and i am currently on prednisone, and percocet for chronic pain. Can a person die from this disease if so tell me at hillv9942@yahoo.com. This disease as affected.my.joints so bad.with inflamation that im unable to work so i applied for SSI last year.after.i got out of the hospital and it cause me from doing alot of walking, stooping, bending, climbing stairs, standing for.long period.of times. Tell me about your experiences with this disease whoever has it or have had it before and tell.me how did you deal with having stills disease
Posted Tue, Oct. 22, 2013 at 10:41 pm EDT
 
From Dr. Peter Barland
For Michelle L: The medications that the patient is taking do not cause joint pain or stiffness. Her symptoms sound like residual disease activity.
Posted Fri, Aug. 23, 2013 at 10:08 am EDT
 
Wuthi
My cousin just passed away from AOSD after we found the disease for two weeks. It's very fast from the simple symptom, high fever, rash and joint inflammation. The doctor can control the disease quite good in the first week. And we plan to let him leave the hospital and rest at home. The doctor told us told us that is so weir that is too easy to handle the disease. However, the situation was upside down. He got side effect on from the medicine. He confused and cannot communicate as normal. We have done with CT scan, MRI, and check on brain infection. We couldn't find anything wrong. The doctor stop using the medicine and we can bring back his conscious. After one day, he away sleep for three days. The doctor did CT scan again. Unfortunately, all the brain was infected and swallowed. We try to control the brain infection, but we couldn't make it. Finally, he passed away after two days on his age of 50. I found that it is very rare that Still Disease can attack brain.
Posted Tue, Aug. 20, 2013 at 12:33 pm EDT
 
Jacq
How is AOSD diagnosed? I was treated for ankylosing spondilitis for 10 years(due to severe fatigue & pain & testing RA positive) then found that I actually had Lyme induced Rheumatoid Arthritis. I would encourage everyone to rule out Lyme disease first because the symptoms are similar and because the treatments for rheumatoid and AOSD will lower your immunity thus allowing the Lyme to take over your body. This happened to me and I was very ill for 2 years.
Posted Sun, Jul. 21, 2013 at 2:58 am EDT
 
Michelle.L
Hi there, i was diagnosed with AOSD A five weeks ago after a months stay in the hospital. I have been taking prednisone and am now tapering down from it. I have also been given Methotrexate which i started 2 weeks ago. I also take folic acid, calcium & Vit D and Alendronic Acid. I feel a lot better but i do get stiffness and slight pain in my joints, especially my wrists and knees. Im curious as to whether this is from the medication or not.
Posted Wed, Jun. 26, 2013 at 8:34 am EDT
 
Danielle
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
 
yen
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
 
Anonymous
where is the picture of the rash
Posted Fri, Sep. 23, 2011 at 1:32 pm EDT
 
Debbie
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
 
Tom
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
 
Upendra
My sister is suffering from AOSD. Please tell me how to overcome this disease.
Posted Tue, Jan. 18, 2011 at 10:24 am EST
 
Tammy
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
 
Anonymous
Harry: please write directly to the editor for an answer to this question.
Posted Fri, Nov. 12, 2010 at 8:31 am EST
 
bidou
(United States) Hi, 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? Thanks, Harry
Posted Thu, Nov. 11, 2010 at 8:07 am EST
 
Arun Dubey
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
 
ken gusdal
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
 
MIGUEL
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
 
vikash anand
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










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