Adult Onset Still's Disease

fbs_4800

Hello people.

Just wondering if anyone else has this condition or knows of anyone with it. Apparently it's really rare and I have it.

I'm 25 years old and a serving Police Officer.

I'm on steroids daily and a mountain of pain relief, plus injections which I self administer fortnightly.

Just wondering if anyone's out there to get a bit of discussion going before I go into detail about meds or symptoms etc...

http://www.mayoclinic.com/health/adult-stills-disease/DS00792

fbs_4800

*Bump* .... in the vain hope I'll find someone to talk to. Sniff.

somebody_else

Sorry you're feeling lonely, fbs, but I'm afraid I've never heard of Still's Disease.

If you want to just have a chat and some company, pop over to the Fibromyalgia thread. There's lots of us there who don't have Fibro but we share similar symptoms and difficulties and in between sharing ideas, support and advice, there's a bit of banter as well.

fbs_4800

Hey... Thanks for the reply. lol. Don't worry. You're not alone. I'm just looking at the hidden disabilities thread. I can very much relate to it. There is a link in my post if you fancy having a quick browse - it may come in handy for a pub quiz someday.

I *will* lurk on the other threads, but I'm still holding out hope for this one. There must be someone, somewhere out there on this site who's a sufferer also...?

celticmoneysaver

Hey hope you find someone.:rolleyes:
.I did try your link but is says unavailble

It might be of use to explain it a bit ..as someone might know of it and not the name? It is a new one to me and always happy to increase my knowledge and possibly understanding ..
I'm waiting for brain to unwind after bad day yesterday..so haven't really slept yet so excuse syntax which is wobbly at best;)

All the best

fbs_4800

Hello again guys. I just tried the link and it appears to be working - but here's a quick summary of it anyway:

Definition

Adult Still's disease is a rare inflammatory condition in which you may experience daily spiking fevers, have achy or swollen joints, and discover a salmon-pink rash appearing on your body. As it progresses, adult Still's disease may lead to chronic arthritis and other complications.
Still's disease is named after an English doctor named George Still, who described the condition in children in 1896. Still's disease is now known as systemic onset juvenile rheumatoid arthritis (JRA). In 1971, the term "adult Still's disease" was used to describe adults who had a condition similar to systemic onset JRA. There's no cure for adult Still's disease; however, treatment may offer symptom relief for adult Still's disease and help prevent complications.


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?

The IDEA was that the injections would start to work for me by now (I've been on them 6 weeks) and that I could wean off the steroids. But they haven't had a great effect yet. In fact, I've been feeling worse. It generally means when I wake up I hurt all over - like I've had a really heavy session in the gym the day before. My arms and legs can hurt, or I can get pain in my neck like really bad whiplash - accompanied by extreme fatigue.

Those are my symptoms anyway. I'm on pain relief of Zydol most days and Co-Dydramol as and when I need it. The frustrating thing is - I'm in pain from my muscles - but I know there's not actually anything wrong as the pain always seems to go by early to mid afternoon as long as I've taklen my meds...

It's the most stupid condition in the world. And sadly, it's not like flu cos it doesn't seem to have any signs of going away.

I guess I'm just really hacked off and felt like a rant on here.

Comments/questions/suggestions welcome guys...

maytaurus

fbs_4800 wrote: »

Hello people.

Just wondering if anyone else has this condition or knows of anyone with it. Apparently it's really rare and I have it.

I'm 25 years old and a serving Police Officer.

I'm on steroids daily and a mountain of pain relief, plus injections which I self administer fortnightly.

Just wondering if anyone's out there to get a bit of discussion going before I go into detail about meds or symptoms etc...

http://www.mayoclinic.com/health/adult-stills-disease/DS00792

Hi
have you seen this site?
They have a Discussion Board and support group

International Still's Disease Foundation

http://www.stillsdisease.org/stills_info

point3

Hi fbs,

Sorry to hear of your illness. Hope things settle down for you soon.

Still's Disease is the name given to a form of rheumatoid arthritis with additional symptoms such as high fevers and a skin rash. It usually affects children, which is why it is often thought of as a type of juvenile rheumatoid arthritis, but, as in your case, it does affect adults too.

For reasons still not fully understood, your body's immune system goes into overdrive and starts attacking other tissues in your body, particularly the soft tissues lining the joints giving rise to pain and inflammation. The steroids and the Humira injections you will have been prescribed are designed to counter the inflammation. The puffiness you are describing is likely to be a side-effect of the steroids and this will resolve once the inflammation settles down and you are able to come off this medication. 'Water tablets' don't work and you may make yourself more ill by taking them wth the steroids.

It's easy to feel miserable and isolated, but you are not alone! Ask your hospital specialist about local patient support groups or contact NRAS (National Rheumatoid Arthritis Society): http://www.rheumatoid.org.uk/

NRAS isn't specifically for people with Still's Disease, but its members with rheumatoid arthritis do share many of the problems that you face. Do get in touch.

Good luck!

fbs_4800

maytaurus wrote: »

Hi
have you seen this site?
They have a Discussion Board and support group

International Still's Disease Foundation

http://www.stillsdisease.org/stills_info

Hey - thanks for the link. Yeah - I've spent a fair bit of time reading stories on there.... but I did find quite a few to be quite doomy and gloomy so I gave up... lol.

I also found a group on Facebook (isn't there for everything?) which I've joined - but as before - most of the people seem to be the US and beyond.

fbs_4800

point3 wrote: »

Hi fbs,

Sorry to hear of your illness....

Hey! Thanks. I know what you're saying about the water tablets.... but it's hard to understand how bad I feel every time I look in a mirror and see my bloated self looking back.

I've wondered if acupuncture or anything would help? I'm really quite sceptical - but - then again - I'm willing to try anything.

My Doctor keeps saying 'it'll be fine when you're off the 'roids.' Which is great. But the next question is always; 'when will that be then Doc?' To which he can't give me an answer... I mean, over a year now. I'm just a bit fed up. lol. Can you tell?

celticmoneysaver

fbs_4800 wrote: »

Hey! Thanks. I know what you're saying about the water tablets.... but it's hard to understand how bad I feel every time I look in a mirror and see my bloated self looking back.
Hey paitence fbs-4800 :EasterBunstick with it sounds like once system responds it will improve on the looks end of things..I ballooned after a stroke which i hated and didn't even know was a side effect until i read a magasine article..but it was the drooling and spasming palsied L side of the face that cleared evryone from table I was sitting at in a pub.:eek:.it really upset me at the time..luckily that eventually improved took some years..unfortunateley that wonder called aging has crept into the equation now;)
i regularly look in the mirror and think who is that? it is not who 'i' think I am :rotfl:

How about taking it from another angle try some breathing relaxation exercises..then when people say things that bug you .it won't upset you so much
Have a think about some replies you could give when someone says something..maybe just saying 'it is a reaction to some tablets I am having to take for awhile'..might be useful?
Try reading some books on stress and finding things that help you chill whilst you get through this tough time..some days will be !!!!! but it is learning ways of still living whislt coping..if that makes sense
people who don't get it aint't worth the hassle:hello:

good luck:rudolf: