Adult Onset Still's Disease

bread_of_heaven

Hi, my daughter was diagnosed with Systemic Juvenille Arthritis (stills disease) about 4.5 years ago when she was just 4 years old.

Like you she began on 20mg of prednisolone, methotrexate injections and Etanercept injections (anti TNF), once weekly. Over a period of time she has reduced her meds and is only now on her etanercept.

Here's a few websites I looked at,

www.arc.org.uk

www.arthritiscare.org.uk

http://www.goldscout.com/books.html - i have this book and it is excellent, yet more geared towards children.

Let me know if you have any questions, I may be able to advise, as being a mum I have looked long and hard at everything to do with my daughter. Take care, you must stay positive.

fbs_4800

Hey guys. Thanks so much for the replies. Bread of Heaven - I will definitely discuss this more with you if that's ok? I joined a Still's Disease Group on Facebook - and the only person to reply told me how she'd had 2 hip replacements, her shoulder done and was now waiting for her wrists... Um - good news I think not. lol

Thanks again - and I'll write a bit more later when I get off the laptop...

carolroy52

Hi there
My sister has just been diagnosed with Stills Disease. She is a trainee nurse, working in London. If you would like to talk to someone about how you feel (in the UK that is), please let me know and I will ask her if she would like your details. I would go into more detail but will wait to hear back from you.

Wishing you strength to deal with this.
Best wishes
Carol Roy

beverley1296

I was diagnosed with stills disease aged 2 years old, my mum was told I would die before I was 12, today I'm 43, It was misdiagnosed I actually had juvenile chronic rheumatoid arthritis, stills disease affects your heart and eyes, I have perfect vision and my heart is as strong as a horse, don't worry about it too much, you probably have a form of arthritis, and the doctor is not so sure of what you have got, get to see a consultant and talk with them. Go on the site Arthritis cares they may be able to help on their forums. As for the puffy face, it's something you have to learn to live with, it's through the meds, the steroids make you balloon up, tell me about it...... don't get down about it as it won't get any better dwelling on it, try to go swimming and exercise, adding weight to your joints will not help. Remember your not the only one in the world with it, it may feel like it at times, you have one of two options, sit in and be a recluse feeling sorry for yourself, or make the most of a bad situation, and always remember the cemeteries are full of people that would love to be alive, I know because I lost a brother to murder aged 34, there are a lot more worse things than aches pains and deformities. Sorry if I'm coming across a bit blunt, but that is the way I have been brought up, and I just get on with life, I take each day as it comes, and I've had plenty of s*** thrown at me over the years, but as they say, if it don't kill you - it makes you stronger. xxxxx

wogglemaker

fbs_4800 wrote: »

Hello again guys.
As a result of mine, I'm on predisolone x 20mg (I think it's mg anyway...) daily which is down from 40, I'm on 20mg (again I think it's mg) of methotrexate once a week and self-administered Humira injections once a fortnight.

I've been diagnosed for over a year now and the thing that's really killing me is the puffy face. In my opinion I look like sh*t and I'm just really fed up of it now.

I'm sick of bumping into people and them going; 'my, haven't you got a bit chunky...' etc etc.

I did ignore it for as long as possible - but now I can see it myself. I look bloody terrible in photos. I know I'm my own worst critic - but I really do. I look fat and ill and it's getting me down.

I don't know if anyone has any suggestions with regards to facial water retention/moonface/or whaever you want to call it.

I've gotten some 'water balance' pills from Tesco which, although it's against my Docs advice - I really don't care. I'm willing to try anything.

I don't suppose anyone out there has any advice/tips on how I can reduce it?

Hi, I've been on and off Pred for many years and get really wound up by the idiots who come out with the weight lifter jokes when you 'steroids'.

Furosemide is what you need from your GP, the main problem with it is you cannot go far from the loo for a couple of hours after taking them (the need becomes rather urgent:o).

I know how you feel about the steroid body thing, is's taking me a long time to learn how to love myself as I am now - limitations and all. (Chronic asthma, C O P D, Steroid induced Diabeties, sleep apnia, and finaly having to go down the route of DLA and incapacity benefit). the deterioration has only been over the last 6 months, and a very uncomfy ride.

look after yourself and treat yourself gently, meditation - breathing exercises and 'healing' music are a great help to me when things start getting on top of me, and well worth a try.

Luv Mel

P S I have been in the place you are at the moment and have found that asking questions and understanding things and how they work helps

Errata

I've been diagnosed for over a year now and the thing that's really killing me is the puffy face. In my opinion I look like sh*t and I'm just really fed up of it now.

That's the prednisolone ! Your'e right, you probably do look like !!!!!! compared to how you should look; I thought I looked like a monster and when I look at pics taken at the time - I did. Not sure if you're a male or female PC, if female - prednisolone gives your neck and trunk a very 'male' appearance, makes your hair thin, gives you facial hair and acne. Depends on individuals how severe these side effects are.
You're probably thinking 'Blimey - that stuff's something to look forward to !'
But..........once the dose starts to decrease the side effects start to lessen and face and body start to return to how they should be.
I you're finding the physical changes really hard to live with, it might be worth you thinking about having some counselling at your GP practice - physical changes like these can be very hard to live with and a bit of support might benefit you greatly. Good luck - HTH

TaBunny

Hey there fbs, I've had Stills disease since I was 4, it's now turned into full blown Rheumatoid arthritis. I too am on 6 weekly steroids. As for treatment, well looks to me like they've caught it pretty quick for you so maybe you could ask about going on methortrexate jabs, you can give them to yourself at home once a week and they do improve the pain etc but they drawbacks are the side effects can be pretty nasty. Why not check out the NRAS website you may find other people on there that have stills disease too. As I said I was diagnosed with juvenile stills disease at age 4, I'm now 43 and still going strong, obviously I am in a lot of pain but chin up you're lucky enough to of been diagnosed in these days of modern medicines, back in my day it was harder to get treatment and so it got left to get worse, good luck to you and I hope you get some help soon.

debzie

Hi

I have just read your post this is the first time i have posted so be kind to me. I suffer from stills disease, I was diagnosed aged 10 (am now 35) so was a child sufferer which ij different to your case. The treatment has improved drasticaly over the last few years and the new drugs TNF and methatrexiate do alot to stem the onset of the disease. I unfortunately have had numorous flairs off the disease which has affected my eyes as well as my joints. Make sure you have regular eye checks and be try to be as informed about the disease as you can. The steriod side effects are a pain but there is not alot you can do I'm afraid but hopefully you should not need to be on them all the time and the effects will disappear. If you want to talk contact me

kittykaboo

Hello everyone! This is the first time i have posted I'm a 48 year old female and have just been diagnosed with this disease. I spent 2 weeks in hospital in November, but as my recovery has been so slow the consultants diagnosed Still's (he doesn't seem to know a lot about the disease, he has only known one other patient). I was on 30mg prednisolone. I saw the consultant in Dec (when he told me the news!) He wanted me to start on Methotrexate after Christmas. After reading up about the drugs and disease I wasn't happy to take methotrexate unless i really need to. I felt really much better over Christmas period. The consultant suggested i started reducing the prednisolone which I am doing. The trouble is, i don't know what to expect or how i should feel. I still have the sore throat which i have had since Sept. (it's on and off, sometimes sore, or feels like a lump). Some days my wrists and ankles are worse than others, so i dont feel confident to go back to work yet. Maybe i should take to Methotrexate to stop further damage. my heart and lungs were affected. i had swellings on my temples and around my eyes and chest, but the doctors didn't seem to know what they were. Later i had red nodules on my arms and knees which felt like bruises. unfortunately they disappeared before they could take a biopsy.