Anyone out there with Adult Onset Still's Disease?

frogmorton

That is excellent news @Ben91

I am so pleased with your bloods long may it last I hope you are feeling more comfortable now too 🙂

My daughter is doing really well now she had to have hip surgery and a new shoulder joint before the was 20 due to damage from the dex but she is pretty well back to normal now. She is a bit of a tough cookie.

Anyway take care of yourself

Guytte_1989

Hi everyone , i live in belgium so i do my best speaking english . Im 31 and i have adult still from my 27. .. i was very sick , a lot of medication every day.. its not getting better

every day i cry .. nobody understanding me. Nog my boss , not my friends .. i didn know this disease till i got it. I love My job i want a

baby , now i have a child 10 years its sometimes difficult.. all my dreams are gone.. a business of my OWN , a man , a baby .. only pain

Brynmor

Hi @Guytte_1989 welcome to the Online Community.

I understand that you have had a diagnosis of Adult-Onset Still's Disease (AOSD) from the age of 27. You are finding life very difficult and are taking a lot of medication to treat the disease.

Our web site has a great page of information on AOSD, which includes information on treatments, managing your symptoms and living with Adult-Onset Still's Disease.

https://www.versusarthritis.org/about-arthritis/conditions/adult-onset-still-s-disease/

I'm not sure what help and support is available in Belgium and it may be useful to reach out and enquire to see what community support is available. You definitely need someone to speak to for help and support.

Do let us know what you find out and how you get on.

All best wishes

Brynmor

frogmorton

Hi @Guytte_1989

I am so sorry to read your post how much pain you are in.

Is this a recent diagnosis (and is it Stills Disease or another type of Arthritis?)?

I wish we could help more, but we are here to listen

Take care

Toni

ceej1979

Hi there,

I am probably a veteran of the disease, because I was diagnosed way back in 1998! I've been in remission since about 2005, and have had no real health problems since then.

What I will say is, always remember, this is a horrible disease, but you're also blessed in the fact that there is a way out. It's something you have to go through, but you will come out the other side, and be a normal human being, with a normal life.

The period you're talking about (the first few years) is always the hardest. It's when you're receiving treatment, but your specialist hasn't quite perfected it (a lot of this disease is unfortunately, trial and error) the illness is fighting back. I had all of the symptoms you have described, if not worse.

But it does get a lot better, to the point you forget you even have it. And then you'll go into remission and life will return to normal.

One thing I can't stress enough is don't neglect your mental health. The disease you will fully recover from, in a few more years. The mental health problems, you never recover from.

I got the diseases at a time when people really did not take mental health seriously at all, and got no support whatsoever from the people treating me, or my family. It just wasn't something people thought about. And I'm not exaggerating in saying I still suffer from PTSD and anxiety, even now - in my 40s.

It honestly only took me 3-4 years to recover from the disease. But has taken me 20+ years to start to recover from the mental health problems the disease caused

ceej1979

It sounds bizarre, but take your mental health even more seriously than you are taking the disease. The disease, you will recover from. Whether it's 18 months or 5 years. It's inevitabe.

PTSD and anxiety, can take you 20+ years to get to grips with. I was a very very confident, fun loving person before the disease. It's only in my 40s, that I'm starting to get back to being that person.

The mental health thing creeps up on you, if you don't take it seriously.

PeterJ

Hello @ceej1979 and welcome to the community, we are a friendly and supportive group and I hope you will experience that for yourself.

I understand that you were diagnosed with Still's Disease in 1988 but have been in remission since 2005 which is really good news. I understand your concerns about the mental health side of living with Still's or any other form of arthritis and this forum hopefully helps as it provides opportunity for people like yourself to connect to others and share experience.

Our website has a lot of useful information on it and I would recommend having a look around but I have pasted a couple of links below which you may find of interest.

https://www.versusarthritis.org/about-arthritis/conditions/adult-onset-still-s-disease/

https://www.versusarthritis.org/about-arthritis/managing-symptoms/emotional-wellbeing/

Please do keep posting and I am sure others will respond as well

With very best wishes

Peter (mod)

calebj

Hi all in the Stills community,

I am new here. My wife has been suffering for the last 2.5 months. The symptoms are complex and evolving. Finally we got to the ER and the doctor gave us 5 potential diagnoses, with Adult Still's Disease as number 5. We spent a lot of money, and as I understand it we eliminated the top 4, leaving only Still's Disease. We then got kicked out of the ER, presumably because the life-threatening hypotheses had been eliminated. We have a return appointment with a Liver doctor (?? not sure why him but that's what they insisted on when they kicked us out ??). I have 2 questions for the group, that I could really use the help with. 1) Any advice on how I can get the doctors to see the whole story of symptoms from the last 2.5 months, they never seem very interested in symptoms that are not currently present, and we hardly ever get more than 10 minutes with any doctor (whether we go to an arthritis clinic, hospital, small local clinic, or ER room), even if we beg. 2) Why are her symptoms changing from one to another, and not all at once. Here is her story

Weeks 1-2 Extreme sore throat + tiredness

Weeks 3-4 Sore throat slowly leaves, and extreme whole-body joint-pain (except shoulders) comes

Weeks 5-8 Sore throat gone, Joint Pain plus swelling of almost all joints, except shoulders

Weeks 9-10 Taking some medication and pain much less, but swelling getting worse and very mild fever

Weeks 11-12 pain gone, swelling reduced but fevers start spiking and faint skin discoloration (? hard to tell if skin changing colors)

Week 13 Stronger arthritis meds, pain returns though (despite highest dose of NSAID), swelling totally gone but now fevers really spiking high near the dangerous territory, and often followed by cold chills and hot sweats. Blood test shows really high WBC.

Week 14 Continue on same meds, pain medium, swelling still gone, fevers still spiking, but cold/hot swings are gone. And now its clear there is a pink, non-bumpy rash but it looks "deep under" the skin and mild

Week 15 Extreme nausea, high pain, moderate spiking fevers but never during lunchtime, eyes turn yellow and more yellow day-by-day, pink rash grows with the fever spikes but not going away fully. Go to ER, they tell us that one of the meds is causing liver damage, but WBC is normal (Because of the meds?) We check for every possible Cancer, Auto-Immune, Liver Disease, Malignancy, Bone disease = Nothing. Docs did not check for ferritin (iron) (why??).

Week 16 (this week) Stopped taking most meds (only corticosteroid and histamine), pain lowers, occasional low fever, nausea is still there but noticeably better, rash turning really dark red and only gets bigger and bigger and redder and redder. Now it is starting to itch, even with histamine.

Is there any research out there about symptoms that evolve over time, or which symptoms need to appear together to get a Still's Diagnosis?

Ellen

Hi @calebj

I would just like to welcome you to the Online community I am so glad you have found the Adult Onset Stills Disease thread and hope that one of the people who have the condition will be along soon to support you and help answer your questions.

Still is a rare condition hence the diagnosis being one of elimination of other possibilities. You may have already read this:

https://www.versusarthritis.org/about-arthritis/conditions/adult-onset-still-s-disease/

but it is worth a read.

This too from NRAS:

https://nras.org.uk/resource/what-is-adult-onset-stills-disease-aosd/

It is really good to see such a caring husband doing his very best to help his wife at such a tough time.

I will leave you now to meet our members, but please do look around the whole community you might find other information to help with some of your wife's symptoms.

Very best wishes

Ellen.

BeGree

Hi @ceej1979. I hope this message finds you as I can see you're not an active user here.

My partner (28F) was diagnosed with Stills last year. She's been taking methotrexate and prednisone, but the treatment seems to be mostly ineffective. The pain she's in breaks my heart as she's always been such an active person and I feel so powerless to make the hurt stop.

I was hoping you could tell me if there are any markers that started to indicate you were going into remission, and what remission is actually like with regards to symptoms? It'd mean a lot to me if I could get some idea of the future we can hope for.

Thanks

Sharon_K

Hi @BeGree

thank you for joining the community. It sounds like your partner is having a difficult time with Stills disease and I understand it must be extremely difficult to see her in so much pain. As partners it can be so difficult. I often find that my partner is a better judge of know how ill I am than I am.

I have put up some information for you

https://www.versusarthritis.org/about-arthritis/conditions/adult-onset-still-s-disease/

I hope someone will be able to share their markers that started to indicate you were going into remission, and what remission is actually like with regards to symptoms. Keep in touch and let us know how you are getting on too

Best Wishes

Sharon

stickywicket

Hi,

I don't have AOSD. I got the childhood version which gradually morphed into RA.

It's really good that you want to support your partner. We do say on here that arthritis affects every member of a family albeit in different ways. I think one of the hardest ways has to be watching those we love in pain. Easier to have the pain ourselves.

I think you're looking for a bit of certainty and, really, that's so difficult. We do have to learn to live with change(s). One thing I'd do, in your situation, is to suggest that your partner find's out what her current inflammatory levels are like. This might mean ringing her rheumatology helpline or, if you get lucky, her GP. (They don't always communicate as well as they might.) If the inflammatory levels are high she might well need more meds. If they're not then it's a matter of learning to deal with the pain. Versus Arthritis has a good section on that https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/ . Flares and remissions can rock up virtually any time, though. Stress doesn't help: learning to live with it does.

Tashlewis

Hi everyone. I have just came across this thread after being diagnosed with AOSD. I was rushed into hospital with meningitis and sepsis. My symptoms came on suddenly - relentless headache, cold shivers then fever, aching joints and muscles and a rash everywhere. Raising inflammation markers even though treated for meningitis and sepsis. 8 days later diagnosed with AOSD. I feel so confused as I feel like the diagnosis was just plucked out of thin air so to speak. After the treatment for meningitis and sepsis, no one knew what else was going on. I couldn’t walk, the rash was everywhere and darkening, my joints and muscles were excruciating and I was so so tired. Given Predinsolne (and other medication for my liver which was damaged from sepsis) and sent home with no information or support. I have been to my doctors who have never heard of it, or seem to care to do much research (weekly blood tests at the moment).

I feel very isolated and alone. I don’t know if I’ll ever lead a normal life again. I’m a teacher with a busy life, plus really into powerlifting/fitness. After two weeks I am back to some type of normality and most of the pain and stiffness has gone (except odd twinge) but that just makes me anxious wondering if it’ll flare up again as quickly as it did originally.

anyway sorry for the lengthy message. Just very confused and frustrated awaiting a rheumatology appointment next week. Hope you’re all well x

HelenS

Hi @Tashlewis

Welcome to the Online Community, you are very welcome, I'm sure you will find lots of help here.

I'm sorry to hear of everything you are experiencing with your recent diagnosis of Adult onset stills disease, AOSD, this must be really tough for you, but hopefully you will get more information at your Rheumatology appt next week.

You've already probably had a look at the links in the above comments but I've included a couple of other links below which hopefully you may find useful.

https://rarediseases.org/rare-diseases/adult-onset-stills-disease/

https://www.versusarthritis.org/news/2020/november/surviving-still-s-amy-s-story/

You can also find lots of useful information on our Versus Arthritis website including how you can manage pain and the treatments available for people with different kinds of arthritis.

Please do keep in touch and let us know how you get on

Take care Helen (Admin) x

Tashlewis

Hi everyone. I have just came across this thread after being diagnosed with AOSD. I was rushed into hospital with meningitis and sepsis. My symptoms came on suddenly - relentless headache, cold shivers then fever, aching joints and muscles and a rash everywhere. Raising inflammation markers even though treated for meningitis and sepsis. 8 days later diagnosed with AOSD. I feel so confused as I feel like the diagnosis was just plucked out of thin air so to speak. After the treatment for meningitis and sepsis, no one knew what else was going on. I couldn’t walk, the rash was everywhere and darkening, my joints and muscles were excruciating and I was so so tired. Given Predinsolne (and other medication for my liver which was damaged from sepsis) and sent home with no information or support. I have been to my doctors who have never heard of it, or seem to care to do much research (weekly blood tests at the moment).

I feel very isolated and alone. I don’t know if I’ll ever lead a normal life again. I’m a teacher with a busy life, plus really into powerlifting/fitness. After two weeks I am back to some type of normality and most of the pain and stiffness has gone (except odd twinge) but that just makes me anxious wondering if it’ll flare up again as quickly as it did originally.

anyway sorry for the lengthy message. Just very confused and frustrated awaiting a rheumatology appointment next week. Hope you’re all well,

Tashlewis

Thanks @HelenS

Thanks for the information. I am sure I’ll get some more answers next week at the appointment but just anxious as do not know anything.

Also, may I ask, if anyone has days where you have some symptoms. Eg: I’m a teacher and had parents’ evening last night. All day on my feet running around a high school then 3 hours with parents (also involved showing them a tour of the school). Clocked up 20,000 steps and my knees seemed a tad swollen last night and my right ankle. Is this normal or is it just because I’ve only been on the medication a month (discharged from his out so a month today). Don’t know if I’m trying to run before I can walk so to speak.

Have a nice day