AOSD Stills Disease Community Group

For those seeking support and information for Adult Onset Still's Disease. Still's disease is a rare autoimmune disease affecting the joints and organs very similar to Rheumatoid Arthritis and Lupus.

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When they ask me what is Stills Disease

When they ask ..
what is Still's Disease?

My reply ..
should be, you know the cells in your body that fight off infection
and all
the bad stuff like colds and the flu? Well, usually after all the
infection is gone, these fighter cells just kind of fade into the
background until the next infection comes along.

Now that I have Stills, these fighter cells have become mutants. These
mutant fighting cells love to fight and kill off stuff so much that
they do it all the time.

Now when all the infection is gone, they keep right on killing. If
are no bad cells left to kill, then they begin to destroy the good
in my body like the good tissue in my heart, my lungs, my muscles, my
joints, my skin,and my kidneys.

That is why sometimes I will have a rash on my neck and face .. it is
the mutant
fighting cells eating up my good skin cells and it causes a rash.

That is why when I say I am tired, and taking so many naps helps make
me deal better. It
is because those same mutant cells are messing up my muscles and
me extremely weak.

When I say "not today", it is not because I don't want to do something
with you .. it is because I cant.
It is not because I don't love you .. because I do.

It is because I don't have a choice in the matter .. no matter how
I want to do something, sometimes I just cant because on that day ..
Still's cells are wreaking havoc in my body.

Some days I will be able to do things, because even mutant cells have
rest some time .. the doctors call it remission. But the good days
be as many as the bad days when I cant do anything ugh! I have
to really enjoy the good days though.

When they ask ..
will Still's Disease make you die?

I should tell them .. probably .. but I could also walk out there and
get hit by
a bus too. We all die someday right .. so why worry about when it is
going to
happen. Let's just enjoy life while we are all here and worry about
death later. But there are days the pain is so bad that, I feel its
not coming soon enough
but I know that is just silly, selfish thinking so I fight it.

The main point being .. be truthful with the kids .. the
husband/wife .. the
family.. or the people you care about.

No one likes being lied to .. and lying only causes more problems.

Be truthful .. relate the facts about Still's Disease .. and enjoy
life while you can.

Plus my next life if feel is going to be so much better.
As Revelation 21:3-4 States:
"Look the tent of God is with mankind and he will reside with them
and they will be his peoples and God himself will be with them and he
will wipe out ever tear from there eyes and death will be no more
neither will mourning nor outcry nor pain be anymore The former
things will have passed away."
I have that hope to help me though this system
with Gods's help I can endure this.

My husband always says "Smile this is your Life!"

Heather Ann Fultz



Hi Heather,
This is so true. I have used this many times to explain to friends why "I can't do that today." Thanks for the invite. I'll be here when I can. I am in an active flare at the moment. My lungs feel like they are on fire. But endurance is what makes us strong :) Hang in there. You are not alone.
Hugs to you!

Karen you hold on sister. My prayers are with you I had the lung thing this past summer so hard to deal with. I started to take Olive leaf extract as a natural antibiotic it worked very well for me it seemed I was on antibiotics for lung infections all the time till a friend told me about this natural antibiotic and it really works I take 2 tablets a day with my other million meds lol. Always talk to your DR first before starting anything thank goodness for me it really helped the lung infections. What meds are you taking for Stills? How long have you had Stils Karen when you get a chance tell me a bit about yourself

I am taking 8 pills aweek of MTX and Prednisone is 2.5 mg daily. I have a lot of allergies to drugs so I am limited in treatments I can receive. I have had Still's all my life with a first DX at 12 yrs. old JRA-Still's than again at 35. I also have a few other autoimmune diseases that have tagged along for the ride. At the moment, I am hanging on but it's a struggle. I'm praying for the endurance to see the next moment. I'll tell you more about myself later. I need to go rest now.

Has your doc tried Kineret? I've been treated for the last 22 years for what the docs thought was lupus, then rediagnosed 2 years ago with Stills. I am 90% bettr on Kineret which suppresses IL-1 cells which are the primary problem with Stills.

Down side is the drug needs to be injected daily. But I can't get over the differnce and I'd been treated with pulse steroids, MTX, immuran, monoclonal antibodies, Enbrel, NSAIDS--and nothing worked. Ask about Kineret.


LOL well we are oppisite because they think I have Lupus what ever it is it stinks!

I'm not happy to meet you guys because you have Still's..but I am happy to know there are other people who have it. I've been a human pin cushion for so long. Thankfully I thought to bring pictures of these rashes I was having all the time and my doctor put two and two together. I'd like to know what everyone else is taking and how it's working for them. Currently I'm on MTX, prednisone, plaqunil, zanaflex, hydrocodone, etc. This new combination of meds doesn't seem to like me much, but at least I can feel SOMETHING changing. I'm going to tough it out alittle longer
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