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Adult Onset Still's Disease
Drs. Lichauco and Sinha are Fellows in Rheumatology, Department of Medicine, Montefiore Medical Center and the Albert Einstein College of Medicine, New York.
It's mysterious and it's rare. A form of rheumatoid arthritis, Still's Disease mainly affects children. But there's even a rarer form which strikes adults -- Adult Onset Still's Disease (AOSD).
AOSD is an inflammatory condition that attacks internal organs, joints and other parts of the body. It can appear and disappear suddenly. In very severe cases, AOSD becomes chronic and extremely debilitating, causing terrible pain and stiffness. After many years, the disease cripples vital organs such as the heart and lungs.
There are treatments, mainly anti-inflammatory drugs, that help with most AOSD symptoms. Until recently, we have known little about its causes but medical researchers are starting to learn more about AOSD. With this knowledge comes the promise of new and better treatments.
AOSD gets its name from Dr. Still, a renowned British pediatrician, who first identified the childhood form of the disease. Though rare, it is found worldwide and predominantly affects young adults between 16 and 35.
AOSD does not seem to run in families. The disease can be difficult to diagnose, as it is difficult to distinguish from a number of other conditions that cause unexplained fever as well as other forms of rheumatoid arthritis, as well as from a number of other diseases.
Symptoms of AOSD
Common symptoms of AOSD include those on the following list. It is important to remember that there is no definite pattern that AOSD symptoms follow. In some cases, only one or two symptoms occur immediately; others may follow later. Aside from fever and joint pain, which are almost always among the first signs of AOSD, some of the symptoms on this list may not appear for weeks, or even at all.
The first sign that someone may be coming down with AOSD is a high spiking fever of 103 degrees or above. The fever usually rises rapidly in the evening and then subsides to or near normal by the next morning. Occasionally, an unusual pattern of two fever spikes in a day is seen in one-fifth of AOSD sufferers.
The typical Still's rash is salmon pink in color and comes and goes unpredictably, although it sometimes occurs at the same time as high fever. It is most common on the chest and thigh, although it may also appear on the face, hands and feet. In some cases, the rash becomes itchy.
At some point, every AOSD sufferer experiences intense joint pain, often in the hand. This can be accompanied by severe muscle pain as well. Both may become worse during a fever spike.
Most AOSD sufferers come down with a sore throat that is usually described as a severe, constant burning pain in the area around the pharynx.
These include pain, difficulty breathing and other problems that can be mistaken for an infection of tissue within the heart.
This can be caused by swollen lymph nodes, as well as enlargement of the spleen or liver. These symptoms are also sometimes attributed to other causes.
These can be easily detected using a variety of blood tests. Most patients with AOSD have greatly elevated white blood cell counts which may lead their doctors to suspect an underlying infection or even leukemia. However, the cultures of the blood and other sites are always negative and the blood and bone marrow do not show the abnormal cells found in leukemia. A group of tests referred to as "acute phase reactants" are almost always abnormally elevated in AOSD. The two most commonly associated with AOSD are an elevated sedimentation rate (ESR) and a high blood ferritin level.
NOTE: We regret that we cannot answer personal medical questions.
(27) Comments have been made
I've been taking Methotexrate, norco and small amount of prednisone (10 mg). I am back to being in so much pain, rash is going back again, my legs are swelling and having high fever. They said that my blood work is normal but I am back into where I was before. Are there any new updates to how AOSD is treated? It's been almost a year for me, I got better with high dose of prednisone but now Im back to misery
Posted Tue, Oct. 7, 2014 at 2:39 pm EDT
ludina e. ben
my husband had this kind of illness last december. his medication stopped last may 2014 because he is afraid of its ride effect. is it okey for him to stop drinking methotrexate and prednisone?
Posted Mon, Sep. 1, 2014 at 3:44 am EDT
A young lady in our community died the day before here 25th birthday with Still's disease. She was diagnosed when she was 17 years old. It has upset this community terribly. 8.28.2014
Posted Thu, Aug. 28, 2014 at 5:12 pm EDT
My husband was diagnosed in 1994 and he just had his first major flare up on July 19th we are still in the midst of this flare up and he is taking prednisone. The problem is that the prednisone is causing steroid induced diabetes and his sugar levels were 480. He started feeling better but now is back to the "wet blanket" feeling and fevers. Have any of you had this happen?
Posted Mon, Aug. 25, 2014 at 12:10 pm EDT
How about an update. That was written in2001
Posted Wed, May. 21, 2014 at 12:49 am EDT
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
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
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
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
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 firstname.lastname@example.org. 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
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
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
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
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