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Rank: Member
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Hi there
Are there any members who have Adult Stills Disease? I have it and was always of the opinion that it was simply a form of RA.
My rheumatologist tells me they are different although they use similar drugs to control both there are certain factors that are
the different. I would like to contact someone with ADSD if they would be willing to meet me on the forum to compare notes.
Clive
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Hi Clive, I was dx with Stills Disease as a child in 1971 but Rheumatologists have since referred to my disease as RA. I don't know what the differences are between childhood Stills Disease and adult Stills Disease and either of those diseases and RA. I had a pre-op assessment last week and when I asked a junior doctor about it, she said I may have been misdiagnosed as a child and had very early RA instead of SD?? Maybe someone can enlighten both of us? Carol
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Rank: Advanced Member  Groups: Registered
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Hi,
I'd love to know too! I was DX with Stills disease in 1980 and over the years we were told if I didn't 'grow out of it' it would become RA. Now it is called JRA isn't it, I thought they were the same!
Very eager to know more too.....
Love,
Amanda
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Hi Amanda and Carol, I found your respponse a great help although you seem to have both started young and moved on to RA. I, on the other hand was first diagnosed with RA although there were questions asked right from the start. It took a professor in London to confirm RA because my rheumy at the time didn't understand certain differences. I was even asked whether or not I had contact with animals at the time although what that indicated I don't know. In 2003 the rheumy here in Lincoln was suspicious and took me in for a series of different tests largely because my "Ferratin" levels were very high. He rediagnosed me as having Adult Stills Disease although it just seems to be a more viralent form of RA. The medication appears to be the same The definition taken from the US is as follows: Adult Still's disease is a rare inflammatory condition in which you may experience daily spiking fevers, have achy or swollen joints, and discover a salmon-pink rash appearing on your body. As it progresses, adult Still's disease may lead to chronic arthritis and other complications.
Still's disease is named after an English doctor named George Still, who described the condition in children in 1896. Still's disease is now known as systemic onset juvenile rheumatoid arthritis (JRA). In 1971, the term "adult Still's disease" was used to describe adults who had a condition similar to systemic onset JRA. There's no cure for adult Still's disease; however, treatment may offer symptom relief for adult Still's disease and help prevent complications. Now I am trying to find out some more since there is little information and it seems to be blamed whenever I don't react as expected. Keep watching this space since I am hoping to get some more responses. Clive 
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Rank: Advanced Member  Groups: Registered
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Hi Clive, Sorry can't help as I'm not familiar with the disease but hope you get some more info. What treatment are you on at the moment?
Julie
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Dear Clive,
That is very interesting and thank you for posting it.
It is very difficult to differentiate between these diseases sometimes. The rheumy I go to is a Professor and extremely knowledgeable on RA and all inflammatory arthritis. He even has OA badly himself.
Last time we saw him he did mention to me that in his long career he has found that people who were DX with RA as very young children sometimes (it is always sometimes with RA!) present very differently to those who suddenly get it in later life (he meant about 20/30+). He said sometimes only a few major joints will be affected and it can remain like that and also that often (obviously one can never generalise) the meds are coped with better.
We found this very enlightening, he did say alot more than this but this was the main theme. He also said that often it is a different type of disease although till classified as RA.
I will be very interested in anything else you find out.
Amanda
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I had a look on Wikipedia under Juvenille Idiopathic Arthritis (formerly Stills Disease) and it explains JIA can be sub-divided into 3 types:- Oligoarticular - affecting 4 or less joints Polyarticular - affecting 5 or more joints and more girls than boys Systemic JIA - arthritis, fever and salmon pink rash From what I can remember, I didn't have a fever or salmon pink rash. At first the doctors thought I had Rheumatic Fever which I believe affects the heart? From those 3 choices above, I would put myself in the Polyarticular JIA category - I had fingers, hands, wrists, feet, ankles, knees and neck involvement. Although I didn't have any eye problems and I've never been told I have any problems with internal organs. My disease has always been symmetrical. My little fingers on both hands have bent joints which I can remember they tried bandaging to a splint to straighten, but of course it didn't work. Amanda, which category would you put yourself in? Carol
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Rank: Advanced Member Groups: Registered
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Thank you Carol, that is most interesting. I forgot to add that my rheumy also mentioned that he thought my RA quite 'unique'! as I had never had iritis which is so common with JRA and just didn't present as a typical case.
I would say I fall into the Oligoarticular which is also interesting as unlike so many, my feet and hands are barely affected, it has chosen my bigger joints, knees and hips to attack.
I never had the salmon pink rash either as a child but did have fevers and all the other RA type symptoms.
Love,
Amanda
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Interesting Amanda, I wonder why we didn't have a rash and yet dx as Still's Disease, rather than RA? I'm grateful I don't have any internal organs affected, at least I don't think so, no doctor has ever said I have and I've been through various scans and tests over the last 18 months. Clive, have you had a fever and/or rash? I'm seeing My Rheumatologist on 19th April and will ask him to explain it in layman's terms. Carol
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Hi Carol,
I developed a rash before any other syptoms came out. The dermatologist at the time couldn't find a reason and said it was excema. This continued for a couple of years then I started showing signs of arthritis which was originally put down as RA.
In the early stages I had periods when I developed high temperatures but this was not really investigated until my blood feratin level rose rapidly. I was taken into hospital for blood transfusions to reduce the level and it was then they decided I had Adult Stills Disease. Since then I have been treated in a similar manner to RA.
Clive
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Yes, this is so interesting.
Carol, I too, hope so much I do not have any internal organs affected wither, that is a big fear of mine.
It's had enough having RA! I didn't have a rash as a child although I will check with my parents (if they can remember that far back!LOL).
Love,
Amanda
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Saw my Rheumatologist this morning and asked whether, in his opinion, I had Stills Disease when diagnosed in 1971. He said there are different types, but he'd put money on it that it was Polyarticular Juvenille Idiopathic Arthritis and I was sero positive, but sero negative now. I didn't know this can change, but he confirmed it can! The treatment is much the same, but its the future outcome that can vary. In my case, most, if not all joints are affected and damaged to varying degrees resulting in the need for surgery/replacements. Carol
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Very interested in all this My mam was taken from 1 hospital to another to gain answers she became ill from age 3 years old they diagnsoed rheumatic fever at the time. she now has oetoarthritis,reoccuring phelbitis,low blood pressure,muscle and joint pain with joint erosion of 1 knee,had ankle corrected triple fusion and tendon shortened same leg as knee.suffered blood clot in same leg after surgey. and has numerous medication allergies.her spine at cervical is curving,and few other problems. they said growing up in such stressful family enviorment plus living in damp accomdation stated all her rheumatic problems off. not ra though. i myslef was a well child apart from exzme,pencillin allergy,wasnt till age 10 i was diagnsoed severe heyfever,15 gynae problems then 17 RA. Melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member Groups: Registered
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Dear Carol,
That is very interesting and it has been intriguing learning about how having RA from childhood can actually be very different from adulthood.
We also had quite an enlightening chat with my rheumy too. He said that my RA was quite a mystery to him as I didn't present as he would expect from a patient with JRA. He says most of the children who have this have iritis and I didn't, plus most of the joints are affected and I have only really suffered with it (albeit badly) in knees, hip and elbows? Like I have always thought it is strange that the obvious places (feet, hands) have never been touched by it.
I felt this was a good appointment although he concluded that RA is too predictable a disease to ever state what it may or may not do.
Love,
Amanda
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Hi All,
It has been interesting to see where my original question has taken people on Adult Stills Disease. I have also been in touch with a forum in the States which only deals with people diagnosed with Stills Disease. While operating differently to ours, it also showed that there are differences between ASD and RA, at least one can claim to be different. The first problem is knowing for sure whether or not you have it.
Amanda, I have found it has attacked my larger joints rather than all the small ones. I now have metal in hips, knees, one shoulder and one ankle. Just waiting to see which other one will be next.
My Rheumatologist wants to change my medication but has to make a case to the Trust for funding if it isn't one of the standard drugs. When ever I see him about any odd aches and pains he says its the disease and there is little I can do except hope he can get me on a drug that really works and doesn't just hide the the symptoms.
In the States they have some who have gone into remission for long periods when the right medication is found. I did discuss it with a Doctor when everything flared up last time I was in France. He said I was on a pretty good collection of medication. The main difference between here and there is you can see a doctor quicker the only problem is for them to carry out tests you have to be either living there of on holiday there for some time (at least a month).
Will keep you informed if something turns up that works.
Clive
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Rank: Advanced Member Groups: Registered
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Dear Clive,
I hope it all works out for you, they seem to get things done much faster in America that's for sure! But then one can walk in anywhere and have a scan or x-ray just like that (until Obama stops this.)
I was originally DX with SD too at the age of nearly 9. It was then re-DX as RA by 17 as it was becoming worse not better!
Amanda
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I had a dxt of Stills disease aged 9/10. then it somehow became Rheumatic fever after 6months in hospital on aspirin (HUGE dose of 500mg three times a day) and weekly injections of SOMETHING (though I have no idea what!! )Then a fairly healthy childhood and young womanhood, ( though when I did get some foul disease, I always got it VERY badly) .............................until six years ago........................the rest is well -documented history!!!! Always be aware that what you do might hurt others........and if it could, do nothing without careful consideration of the consequences
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Since speaking to my Rheumy on Monday, my interest in this topic has accelerated and I found this ...... http://www.orpha.net/data/patho/GB/uk-still.pdf
The above suggests juvenille Still's Disease is roughly the same as Adult Still's; it's junvenille in under 16's. Juvenille Still's has 3 forms - oligoarticular (affecting fewer than 4 joints), polyarticular (affecting many joints) and systemic (affects joints & internal organs etc.) I assume adult Still's can take one of these 3 forms also? My Rheumy said what each diagnosis can do is give the Rheumy an idea of of the patient's future outcome. What the disease is called is really a question of semantics. He's also of the view that its hereditary. Clive, for a male to have adult Still's is very rare, no wonder you can't find much info on the topic, but it's heartening to read it's possible to go into complete remission too. Lylie, the above article mentions aspirin. Were you given steroid injections, something abbreviated to "A.C.T.H." - I had them 3 times a week for 4 years? Carol
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