Newly diagnosed - Stills Disease | Arthritis Information

I have just stumbled on the site after a google search.

I've just been diagnosed with AOSD (adult onset stills disease), and I'm also from the UK. I'm 34, and finally got a diagnosis from a very good rheumatologist, and I'm starting steroids - 20mg.

It would be great to talk to others to share their insight.

Sue

Thanks Lisa for pointing in the right direction for chatting here.

I am also in the UK ( KENT)

Welcome!

Thanks for the welcome

Sorry I didn't explain the AOSD label - stills disease or Systematic JRA in adults.

Welcome Sue!!

I also have RA and unfortunately, I'm not familiar with AOSD either. I also agree that someone in here will come along that is familiar with your situation. That being said...we may not know what you go through or what you experience but tell us more about it...we have some very knowledgable, kind and and supportive people here.

Peace & Love...Neasy

Welcome, I wish I was in the UK, today! I need a good vacation. Will write later, me Welcome to the board!!!! Glad to have you here.
I found this link explaining what stills disease is.
http://www.arthritis.ca/types%20of%20arthritis/Stills/defaul t.asp?s=1

Sue,
Are you going to go on any other meds?

Thanks for the link, having only just found out about it myself it's great for any information.

Yes I will be going on some other meds, but I don't know what they will be. I start the pred now and then in a couple of weeks I see the Dr again and he's said he'll then start some other ones.

Being new to it myself I'm only just starting to find out about it. But for me it's meant a high fever for over 6 months now, a rash, flu-like symptoms and fatigue and joint aches and pains. It's taken 8 months to find out what the problem is, so I'm now relieved that at least I can start getting treatment.

Thanks for all your welcome messages

Sue-UK39246.5115740741

Hi, Sue:

I, too, have AOSD. Yep, went throught the raging fevers, the rash, and all the usual stuff associated with it. AOSD is virtually the same as systemic onset juvenile rheumatoid arthritis. While most of my joints are affected (I've had this for some years) my hands, wrists and feet are my worst.

The steriods will help relieve the inflammation (I got to where I couldn't move out of my chair) but it isn't the full scope of what medicine can do for you at this point. I've tried any number of different things (unfortunately to no avail, and one with a major life threatening reaction), but prednisone remains the thing that keeps me going. I was taking 10 mg. for years, but am in the process of weaning now (down to 7.5 mg.) My goal is to get to 5 mg. or a little lower with the help of other anti-inflammatory drugs. I'm in fairly good shape for the amount of time with the disease with only moderate erosions.

Be sure to add in Calcium with vitamin D to make up for the loss of calcium due to the prednisone, if you're on it for any length of time. You may send me a private message to ask specifics or ask on the boards.

Janis

bumping this forward to let Sue-UK know she's not alone.

I am an RA girl (girl? - well I WAS a girl once upon a time

Thanks IslandWoman, that's really good to know. I'll be calling on you for your knowledge whenever I need some answers from someone who really knows.

I'm collecting the prescription for the first Pred later today, so hopefully I'll be somewhat more myself in a few days.

Hi Sue,

I'm Kate from the UK and I was diagnosed with AOSD in Dec 2005. I've had the disease for 4 years though. It took a long time to diagnose unfortunately. I've tried a number of diffferent medications but I'm still trying to find one that can keep things under good control. I'm currently taking prednisolone, methotrexate, azathiaprine and a whole host of other things. I'd love to chat to you more about it so do feel free to contact me if you wish.

Best wishes

Kate