Anyone out there with Adult Onset Still's Disease?

1246

Comments

  • Carol79
    Carol79 Member Posts: 37
    edited 30. Nov -1, 00:00
    Thanks I appreciate that! It's a very simple website but it has taken time to do due to my rheumatologst working 400 miles away from me and wanting to do everything by post rather than email!! I'll hopefully be sending round the link soon so that I can get as a much feedback as possible.

    Carol X
  • em78
    em78 Member Posts: 12
    edited 30. Nov -1, 00:00
    stacy458 wrote:
    Hi all I'm glad there are still people on this page. Atm I am going away from a flare up but my symptoms don't completely go away. I was just wondering if anyone has experienced trouble focusing anf fatigue for me this is happening.

    Yes this does happen! I have often believed Stills was stripping away my intelligence during a flare! After a bad flare I believe I lose some memories of the time I was sick too. Your body is quietly 'on the go' with your immune system battling away so there is considerable fatigue here even if you are sedantry. It does go away though! Summer is usually when my flares are the worst but they are now under control with meds (and breastfeeding my baby!) and I am feeling the most lucid I have done for ages! Saying that I have a cold so I am hoping it stays that way!

    After a diagnosis and a flare bewilderment and stress can creep in which can be hard to deal with. Stress can magnify feelings of fatigue and inability to focus so it's important not to put pressure on yourself and deal with things gradually. The thing with stills is that we can look normal on the outside when we are feeling utterly dreadful on the inside. People see you as 'ok' and expect you to be fully functioning. It's important to communicate to those involved in your everyday life that you are still recovering so that you don't find yourself doing too much too soon.

    I hope that your are feeling better soon and give yourself some tlc xx
  • em78
    em78 Member Posts: 12
    edited 30. Nov -1, 00:00
    Carol79 wrote:
    Thanks I appreciate that! It's a very simple website but it has taken time to do due to my rheumatologst working 400 miles away from me and wanting to do everything by post rather than email!! I'll hopefully be sending round the link soon so that I can get as a much feedback as possible.

    Carol X

    Happy to help...just let me know when your link is ready
  • stacy458
    stacy458 Member Posts: 5
    edited 30. Nov -1, 00:00
    Thanks it nice to know I'm not losing my marbles like I said not of the symptons have gone but its liveable. My first flare up was five years ago but it was undiagnosed until now. But it is very good to see that most of this is not in my head so thank you.
  • em78
    em78 Member Posts: 12
    edited 30. Nov -1, 00:00
    I know what you mean about thinking it is all in your head. It took me 10 years to get a diagnosis and only after I was admitted to hospital for 2 weeks. In those 10 years I was told it was a virus, post viral fatigue syndrome, reactive arthritis, pneumonia, flu-like illness, tonsillitis (several times without anyone taking a swab), UTI (even though none of my symptoms were of a UTI) and food allergies. When you feel doctors aren't taking you seriously it's hard to take yourself seriously. I eventually got doctor fatigue and gave up, suffering through flares until they got progressively worse. I admitted myself to A&E in the end as I had a really bad flare at the end of my honeymoon and I was desperately fed up!
  • stacy458
    stacy458 Member Posts: 5
    edited 30. Nov -1, 00:00
    I completely understand. The last major flare up I had, I knew this was like the last one but I had to go through it and when I was finally admitted into the hospital it was treated like a communicable. Disease and I was place in isolation for a couple days it was rough considering my family wasn't sick.
  • em78
    em78 Member Posts: 12
    edited 30. Nov -1, 00:00
    Same here! I was in an isolation room in the Tropical and Infectious Diseases ward. Lucky really because those doctors were excellent and did every test going and saw it right through to diagnosis. I think they initially thought I had something like Dengue or malaria as I had just came back from Mauritius when I was admitted. They even did PET scans for anything more sinister. They were so thorough they were great. They first had to rule out a genetic condition called TRAPS (familial hiberian fever) which is similar to Stills. I look at my baby and thank goodness I didn't have TRAPS.

    Glad that you got your diagnosis. Hope the symptoms recede soon xx
  • Carol79
    Carol79 Member Posts: 37
    edited 30. Nov -1, 00:00
    Hah, I was in the Infectious diseases unit for a few days as well, but yes for me also it was the best place - for one thing you get a room to yourself!! - as it was where I too got the diagnosis, even after 5 weeks in other hospitals. Not nice to feel like an infectious disease though! X
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    There was an interesting article in the last NRAS magazine on Adult Onset Stills Disease about 6 months ago. It was by Dr Joel David for your interest - although as you have this rare disease I guess you'll probably know most of what he was saying about diagnosis and treatments. Take care and I hope you find people you can share stuff with. Mat x
  • em78
    em78 Member Posts: 12
    edited 30. Nov -1, 00:00
    Thanks Mat! Ooh I don't know that magazine or that doc. Where can I get a copy? Is it on the net?
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Well done - I'm a member and spotted his name because I'm friends with some of his relatives which is how it caught my eye. Hope it's helpful in some way to you? Mat xx
  • misshiggs
    misshiggs Member Posts: 1
    edited 30. Nov -1, 00:00
    HI everyone,

    I have just had a wee look at the link posted by em78 and its probably the most informative info I've saw online regarding this condition, thanks for posting it. I was diagnosed last summer and its been a horrible year but I'm now off my prednisolone for 4 months (august to november) to see how I get on, living in fear of not being medicated :shock: .

    Could anyone please tell me if they have been removed from all medication and if so how they got on? I am trying to get back to the gym & get back to doing basic things like walking the dog daily & doing somehouse work after my office job but it's hard work.

    Thanks for your advice

    Claire x
  • Carol79
    Carol79 Member Posts: 37
    edited 30. Nov -1, 00:00
    Hi Claire,

    Yes, I am off all medication now and so far going well, though I think pregnancy helped to keep it at bay in the first place. I don't want to count my chickens just yet as I still get the occasional bit of rash and am certainly a bit stiffer in the run up to my periods but that is it and I can live with that ;-).

    Carol X
  • Carol79
    Carol79 Member Posts: 37
    edited 30. Nov -1, 00:00
    Hi Claire,

    Yes, I am off all medication now and so far going well, though I think pregnancy helped to keep it at bay in the first place. I don't want to count my chickens just yet as I still get the occasional bit of rash and am certainly a bit stiffer in the run up to my periods but that is it and I can live with that ;-).

    Carol X
  • stacy458
    stacy458 Member Posts: 5
    edited 30. Nov -1, 00:00
    Getting a medication increase then going down and off completely my flare up is almost "asleep" but I now have a ball that is overtop my joint
  • Carol79
    Carol79 Member Posts: 37
    edited 30. Nov -1, 00:00
    Hello!

    If anyone is checking this feed, could you do me a big favour? I mentioned a while ago that I was working on a new website purely for patients of AOSD. It has taken forever but it's finally published: www.pasdassoc.wix.com/pasda

    It's nothing much but I am hoping it will grow if other people contribute to it. Please could you take a look and tell me what you think? What needs adding, what needs work, etc. Is it actually useful??? I realise it's a bit rudimentary but I am stuck using free website design until any funding is secured for it.

    You'll also notice there is a page for case studies. If anyone is willing to contribute their own story to this I would be so grateful. I've done my own so you can get the idea of length, detail, etc. If you are happy to provide a case study please send it in Word format to [email protected]

    Many thanks in advance,

    Carol
  • em78
    em78 Member Posts: 12
    edited 30. Nov -1, 00:00
    Had a quick look... Looks good. Very good infact. Well done!

    I'll try and write a case study soon. I'm sleep training and weaning the baby at the moment so it might be a few weeks cos I'm knackered ;-) Soooo tired!

    Can you add the link to the international stills disease federation? I'm not sure how up to date it is but the case studies on there really helped when I was first diagnosed and also the articles they link to. Although the best article seems to be the nras one.

    Thanks so much for this website! Hope all is well with you and your baby too.

    I think I have some rash pics too if want those?
  • Carol79
    Carol79 Member Posts: 37
    edited 30. Nov -1, 00:00
    Hi Em, yes that would be great thanks! And no rush on the case study, good luck with the sleep training!! Will do the link to the federation too, I kept it off because I don't think its going anymore and I've struggled to get any response from them but if the info helped you then that's worth it.

    Thanks!

    Carol X
  • Loulou11
    Loulou11 Member Posts: 86
    edited 30. Nov -1, 00:00
    Hi everyone I've had child stills found when I was two years, I went into remission at 13 and it came back with a vengeance at 16.(in 42 now) I'm so glad to hear from others with the same condition, all through my childhood I was the odd one out. I can't say I've missed out on anything, I will have a go and do things differently but the end result is the same. I too have great family support but they don't understand the everyday challenges And constant achy feeling.

    I'm now on a strong cocktail of meds and keep as mobile as poss, I strongly believe if you don't use it you lose it.

    I was told I would be in a wheelchair by the age of 20, well I'm still walking, and only use a chair if I have too.

    Thank you all for being there

    Loulou
  • Carol79
    Carol79 Member Posts: 37
    edited 30. Nov -1, 00:00
    Hey Loulou,

    Really great to hear from you! Your story is a familiar one, though I have only met one other person who got Still's as a child as well as an adult. Her name is Laura and she blogs about it on her website called Still's Life. There is a link to it on this new website I've just set up at www.pasdassoc.wix.com/pasda, perhaps it would help you to check it out and get in touch with her? In any case do keep in touch and tell us how things work out, really great to hear you are keeping mobile. I have never forgotten what my rheumatologist said to me when I asked if there was anything I could do with my lifestyle to help things: "Just don't get fat!" ( I don't think he believes too strongly in being politically correct!)

    All the best,

    Carol
  • Loulou11
    Loulou11 Member Posts: 86
    edited 30. Nov -1, 00:00
    Hi Carol thanks for the heads up. I checked out the site and found it good to know others. My rheumy says I probably know more about the condition than her so I don't have much help to understand what's going on. I'm now 42 and have metal rods in my wrists and foot and now they are looking into hips and knees, as a child I was given steriods and have not been able to come off the so now have osteoporosis as well, but hey ho I'm still here and that's what counts.

    Word of warning to all, taking steroids short term does help but don't stay on them for the sake of it, they are not worth it!!

    My motto to live by is:::

    I exist to live
    not
    live to exist xxxxxx
  • enaid
    enaid Member Posts: 5
    edited 30. Nov -1, 00:00
    Hi Carole
    Just spent an interesting hour reading all previous posts after being led here by the other thread! This is helpful for me and I am sure when my daughter has had time to relax and let it sink in she may want to contribute
    Many thanks :D
  • borgania
    borgania Member Posts: 2
    edited 30. Nov -1, 00:00
    Good day people,

    I am 47 and I was diagnosed with Still's in July 2012 after three weeks in hospital being tested for everything! Spent another week in hospital post diagnosis and now managed with out patient appointments. Although I recently spent two weeks as an inpatient with pain in right upper torso, they couldn't find what was causing it so sent me home with painkillers and follow up with gastro and rheumatology. I have posted my full story on Carol's website so won't repeat here as its quite long! http://pasdassoc.wix.com/pasda#!casestudies/c1mhs

    I do however, have a question regarding symptoms. At the moment I am on 25mg prednisolone and 5mg bisoprolol with various anti-inflamatories and pain killers as needed. I have been diagnosed as being post-menapausal. My problem is excessive sweating or hyperhidrosis. It can happen several times an hour both day and night and is such that I have to change clothes and sleep with a fan on all night and with a towel on the bed and between my legs to absorb the sweat. If I do any kind of normal activity, such as hoovering, the sweat pours off my face, down my back and legs if I'm not wearing trousers. If I sit for any length of time it looks like I have wet myself because the sweat just runs down my back. I wake up in the night several times and often feel sick, probably from dehydration and also have a dry mouth. I have been tested for diabetes which is negative. So my question, finally, is - does anyone else suffer from this condition as part of Still's or the medication they take? I am awaiting an appointment from Endocrinology but might take a while!

    thanks

    Su
  • em78
    em78 Member Posts: 12
    edited 30. Nov -1, 00:00
    Hi Su,

    First of all, hello!

    I haven't heard of those but I do get cold sweats (awful sensation!) from paracetamol and ibuprofen. Can it be a reaction to your meds?

    I hope you can get to the bottom of it soon. I really feel for you. I was referred to endocrinologist too as I had high prolactin levels. The appointment came pretty quickly. I'm seen at UCLH in london. Hope yours comes quickly too.

    Take care xx

Who's Online

6
6 Guests