So I came in today to get bloods checked. Felt crap this morning and would have gone back to bed but for the appointment.Got onto the acute care ward. Started to shiver. My temperature was 37 and then jumped to 39.
The rheumatology Dr came..he thinks I have adult onset stills disease and it wasn't seronegative arthritis after all. They have increased my pred to 40mg and are keeping me in for observation over weekend.
So I might actually get better now.
It is such a relief to realise you might get answers and that somebody is taking your problems seriously.
Oh my. Everything crossed. Xx
Let's hope so, at last!
Let's hope that the steroids work their magic pdq. Getting an accurate diagnosis would be amazing. Feeling better, especially at this time of year, would be well overdue. Wishing you well
i have a friend in NZ who was diagnosed with Stills last Chritmas. Had a really rough time, but is now stabilised and doing fine. So hope yiu get settled quickly!
All the best to you and hope this is the beginning of better times!
That must have been a bit of a shock for you, hopefully you will feel a lot better soon 💐
Onwards and upwards, hopefully a diagnosis gives you access to appropriate treatment
at least they are trying to resolve it and find out what you have! Not great to be in hospital BUT maybe treatment will get sorted for you that works 😘
Obviously not good news to be back in hospital but perhaps now things will start to improve for you. Hoping the pred brings things under control quickly and you can return home to your own bed soon. 🤗
I was diagnosed with Adult onset Stills disease back in 2018 at 57. I was lucky that a young doctor diagnosed it nearly straight away. High temperature and a salmon pink rash on both legs and back. They increased my prednisone to 40mg and I then started methotrexate which didn’t agree with me. I have had numerous biologics and anakinra worked well but I had injection site reactions. I’m currently in tocilizimab. It’s so important to get a drug that works quickly to stop the joint damage. I have just had my knee replaced due to damage caused by the disease. I hope you find a good consultant asap. Good luck
Thanks for that. I was on tocilizimab about three years ago and felt fantastic but I got an infection....they think and stopped it so I'm hoping it's a sign that this is the diagnosis. Sorry you have needed surgery, I'm hoping that the six years I've been struggling hasn't done anything although I'm sure my lungs have damage because I have pain when I breathe deeply and they can see collapse.
Still I'm relieved that they are finally putting the pieces together.
it’s great you have been diagnosed. I was on tocilizinab three years ago and had infections. It was IV. They took me off and tried lots of other options. I sought a second opinion in London and have gone back on tocilizimab sub cutaneous. Seems ok at the moment. I had a macropharge activation syndrome in January when they prescribed Filgotinib with co trimixaxole Best to be careful what they prescribe. Have they suggested anything yet?
Anakinra. I had tocilizimab s/C three years ago and got pneumonia so they stopped it but I felt great on it. Didn't realise I had pneumonia for a Month.
Sorry to hear you’re back in again, however it’s great that the doc has given you more of a diagnosis and hoping that now a treatment plan specifically for Stills disease will see you improving. Thanks for letting us know. Hope you recover quickly and don’t have to stay in again at any point once you’re stabilised. Keep us updated if you can.
Hoping you get some effective treatment and can escape soon. Sending best wishes
Sorry to hear you are back in hospital 😞😞. I really hope they get you on the right meds route and they help. I don’t know much about Stills disease but sounds like the doctor is on the ball in there. Xxx
Hope you get better soon, glad you have some answers.
I’ve only just seen this and hope you’re feeling a bit better. Hospital is never nice but at least you might get things sorted sooner. I don’t know what’s Still’s disease is but am praying you can get some help for it quickly. Stay strong and try to keep your strength up by eating and getting enough sleep which in hospital can be very difficult. All best wishes xxx
I was diagnosed with Adult onset stills disease aged 17 in 1979 at what was then called new Addenbrookes hospital in Cambridge, I’m 61 now and been free of serious meds since my mid 20s although the joint damage and symptoms have persisted daily these last 40 years and altered the course if my life .
Apart from steroids back then the drug given was Indocid SR capsules, discontinued now in favour of newer drugs but they worked for me without side effects along side iron, enteric coated aspirin, steroids, distalgesics and that’s all I can remember, I lived at home bed bound for three months with Mum having to feed me and give me my meds etc until the phase passed and after a few years I recovered well enough to go to college.
Interestingly I’ve been unwell this year, my own lay research leads me to MAS which is more likely with Stills apparently . I’m discussing this on my next call with GP so will feed back any findings.
Message me any time and wish you well.
Gosh what a journey. Interestingly my best friends mum, who is honary grandma to my kids ( my mum passed when I was three) had the kids version and has had both knees replaced. She was in yesterday when the DR was round. Much confusion as he probably initially assumed she was a relative. I'm not bed bound but then the DR did point out that they have never seen me without steroids given I was started on them by the GP under guidance from the private consultant at initial diagnosis six years ago.
They just kept telling me I was a difficult case but I'm relieved to have a different diagnosis as there are alternative treatments.
I've read about the MAS thing hope you're ok.
How are you?.
I hope you much better soon
Hospital Appointments 
One step forward 2 steps back
Both of us at the hospital this morning.
Hospital
