I have systemic juvenile idiopathic arthritis

CarlyJane1996
CarlyJane1996 Member Posts: 3
edited 6. Feb 2014, 18:02 in Young people's community
I am a denial aged 17 soon to be 18, in 2012 I gradually started to fall ill getting worse and worse this started with a serious chest infection which then I started to feel tired and constantly drained I then stopped eating and lost loads of weight my mum was taking me to the doctors and they were doing blood test after blood test which were all coming back perfectly normal so my mum thought it was because I did not want to go to school until one weekend I was lay in bed and couldn't keep any drinks,good anything down I had constant nose bleeds and could not physically move. My mum then took me to the emergency doctors who sent me straight to the hospital I went to stepping hill hospital in Stockport who did test but couldn't find out what was wrong so they then sent me to Manchester royal hospital in Manchester once I got there they found a huge lump under my arm and when my mum explained all my symptoms they told her to prepare her self as they thought it was lukemia I had gotten this bad with it I nearly died and ended up in intensive care fighting for my life they then did a bone marrow to try and find out what it was, when they test came back I got the all clear but it was I fact systemic juvenile idiopathic arthritis and I had a severe case of it now that they knew what it was they put me on steroids, methotrexate and anikinra to treat the illness and I had physiotherapy to help learn to walk again after being on the medication for a year I the name off it and have been perfectly fine until recently, just 4 weeks ago I started to feel ill again temperatures started,joint pains ect and I went to hospital which I was admitted they did test and my spleen and liver were enlarged again my white blood count was also low and they were extremely worried about me not eating they wanted to tube feed me but I refused it, I am now at home still not well in constant pain and crying because it scares me I have to go back to the hospital on Wednesday to have more bloods done and possibly starting new drugs they are also considering doing another bone marrow, I'm just wondering if anyone else has been through the same sort of thing as it would be nice to speak to someone who's experienced it and understands

Comments

  • stickywicket
    stickywicket Member Posts: 26,238
    edited 30. Nov -1, 00:00
    Hi there CarlyJane. I'm not a young person though I was (15) when first diagnosed with RA. I thought I'd answer as it's very quiet on the forums in general right now and even more so on this one.

    You've been through a really torrid time. My own diagnosis was far more straightforward – just painful and knobbly knuckles which led to a blood test and diagnosis.

    I wonder if you might find it useful to talk to one of our Helpline people? The freephone number is above.

    I'm sorry the meds are no longer controlling your disease and I do hope Wednesday brings some good news. Please keep us informed.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Kittkat
    Kittkat Member Posts: 309
    edited 30. Nov -1, 00:00
    Hello there
    You sound like you have been through a tough time! I hope you get something sorted soon so you can get some relief. I am 24 with arthritis so just in the young persons with arthritis category if you want to chat at all feel free to pm me or as stickey says give the helpline a ring
    Take care X
    How am I gonna be an optimist about this?
  • CarlyJane1996
    CarlyJane1996 Member Posts: 3
    edited 30. Nov -1, 00:00
    Thankyou everyone it's great to get advice and hear from people who have been through a Simular thing, I got taken back into hospital yesterday with it now think I have a blood clot on my lungs so they will hopefully get it all sorted thankyou for your help and advice it means a lot x
  • stickywicket
    stickywicket Member Posts: 26,238
    edited 30. Nov -1, 00:00
    Oh dear, CarlyJane! How awful for you! I hope they get on top of this very quickly. I am thinking of you.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • stephibabe2
    stephibabe2 Member Posts: 60
    edited 30. Nov -1, 00:00
    Hi this reply is a little late seeing as you posted it back in December but just wanted to say I hope you are feeling much better now! I also have systemic JIA so know some of the things you are going through. Can't believe you had to wait so long for a diagnosis and it was left untreated for so long. Anyway just wanted to post so if you wanted to chat we could. Wishing you all the best, Steph