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Grow out of systemic side of JIA ?

stephibabe2stephibabe2 Member Posts: 60
edited 10. May 2011, 18:21 in Young people's community
Hiya :)

I'm Steph, 17 and I have systemic on-set JIA which was dignosed when I was 5. I was just looking for anyone around my age or older with this type of arthritis to chat to and share stories. :D I have recently had a bad flare, and was curious if anyone has grown out of the systemic side of this type ?

Best wishes x x

Comments

  • wibberleywibberley Member Posts: 421
    edited 30. Nov -1, 00:00
    Hi there and welcome to the forum,

    I'm far too old to be in here but just wanted to let you know that I was diagnosed with systemic JIA aged 7. I was symptom-free from ages 11 - 23 and then 25 until now! Rheumy very puzzled as to why it should return now, which doesn't fill me with much confidence!

    There are a few others here with JIA so I am sure you will receive more replies - from forummers not old enough to be your mum!

    Lois x
  • stephibabe2stephibabe2 Member Posts: 60
    edited 30. Nov -1, 00:00
    Heya :)
    Thank you very much for your reply it made me laugh. Its nice to hear peoples stories who are a variety of ages. Let alone it puzzling the Rheumys it puzzles me !! Haha. When Im not having a flare I do not have any symptons of the systemic side and a Rheumy even suggested that I did not have arthritis any more, which I found astounding as I was still having joint pain. As a result I do not see her anymore lol. I was very lucky to not have a flare for 5 years although I had many other problems during that time (for example I suffered with benign intercranial hypertension) not sure if you would have heard of that. So it is also very puzzling why I would have a flare now, as I cannot think of anything that would have caused it. I was wondering if you have ever had the inflammation going to any organs? As during this recent flare it went to my heart, I wanted to know if anyone else had suffered with this.
    Does your Rheumy think the systemic side will continue or is it possible you could still 'grow out' of it ?


    Thank you again for your message, Steph x x
  • wibberleywibberley Member Posts: 421
    edited 30. Nov -1, 00:00
    Hiya Steph,

    Getting a yes/no answer out of my rheumy is ny impossible - he's worse than a politician! I have asked him if this is just a relapse or back for good but he just shrugged his shoulders!

    I can only presume that this hasn't affected my organs - my rheumy doesn't seem overly concerned and hasn't asked me many questions about my overall health, so I think it has just affected my joints. Sorry to hear your heart has been affected - screening and monitoring are much better than they used to be.

    Generally, JIA sufferers do go through periods of being symptom-free. I personally think this relapse of mine is linked to hormone imbalances - something else my rheumy has only shrugged his shoulders about, but we know our own bodies!

    I hope this dies down again for you soon, steph. Fingers crossed!

    Lois x
  • stephieystephiey Member Posts: 61
    edited 30. Nov -1, 00:00
    Hiya, I'm called Stephanie too and I'm also 17 lol
    I've had JIA since I was around 4/5 aswell, my fingers are still cross that it will go! I keep having panic attacks thinking about the future! I was in remission though, they always used to say that I'd probably grow out of it when I hit puberty & it did, I was in remission from age of about 11 until I was 14.
    Consultants all seem to have different opinions on everything so getting a straight answer is more than difficult!
    Hope you're feeling alright & everyone else as well!
    If you ever fancy a chat you can PM me or just write back =)
    Take Care everyone
    Steph
    x
  • He1enHe1en Member Posts: 19
    edited 30. Nov -1, 00:00
    Hi Steph

    I'm 24 and have Systemic JIA too (Diagnosed aged 3). I had terrible flare ups at the ages of 8, 12, 16, 18 and 20. Resulting in long stays at hospital! Touch wood, I haven't had any more so I am hoping that I may have grown out of them. (I am on Etanercept, Methotrexate, Steroids & painkillers so this is also helping to keep things under control)
    My worst flare up was when I was 16 and I had pericarditis with that as well as those dreaded high temperatures :evil - I also developed M.A.S which was very rare.
    For me - I believe stress triggers my flare ups.
    I moved house around the age of 8 and had to start a new school which caused the 1st flare.
    GCSEs and A Levels & Moving house again bought on the other flares.
    However the last 4 years I have been at Uni and had no flare ups - so I really do hope that I have grown out of it.
    My Rheumatolist years back when I was 8 said that the Systemic part should fizzle out by my early 20s and so far, she was right - so there is light at the end of the tunnel!
    I hope this helps - I have only just joined the forum and am so pleased to meet other Systemics.
    Take care
    Helen x
  • stephibabe2stephibabe2 Member Posts: 60
    edited 30. Nov -1, 00:00
    Hi Helen,

    So sorry for such a late reply, Im not normally that bad but the suns is out and all :wink: haha welcome to the forum though.
    I posted that quite a while ago so was surprised someone had posted now but when I read your message was really shocked as I haven't seen a post or message from someone who has had really similar circumstances. Im not sure if you had the same experiences but I have not spoken to anyone who has systemic side as its quite rare I beleive. It is good that you were able to work out the ages of your flares and then figure out they were due to stress at those times. I keep meaning to do that with my own but never get round to it haha it might turn out mine is due to something :S that would be good to know.
    When I read about you having your worse flare at 16 and having pericarditis was funny as about 18months ago now that happened to me when I was 17 (a bit spooky) lol
    Im glad you haven't had any bad flare ups recently as I know how bad they can be. I'm going to uni in september which will be good but also nerve racking too as worried how I will cope by myself but sure it will be fine.

    Would love to chat more on fb or similar, if you want to. If not I don't mind doing posts lol I will try not take so long to post back haha
    Best wishes Steph xx
  • He1enHe1en Member Posts: 19
    edited 30. Nov -1, 00:00
    Hi Steph

    Thanks for your msg. Yes sorry for the late reply to your post - I was just so relieved to find someone else with the Systemic Arthritis as it is a rare type, and you are the first person I have managed to find so I had to reply!
    So you are starting Uni in September? What are you going to study? I finished Uni last year and studied Applied Arts at the University of Hertfordshire. I didn't get the 'live in' experience of being a Student because I was local to the Uni and travelled in from home each day, but I am sure you will cope fine!
    Bye for now
    Helen x
  • stephibabe2stephibabe2 Member Posts: 60
    edited 30. Nov -1, 00:00
    Hiya

    Yeah thats the plan, get in before the fee's rise too ;)
    Im studying early childhood studies with education, fun but hard work I'm guessing its going to be lol
    That sounds good, whats the diference between arts and applied arts? haha little random but I was wondering
    Ah yeah seems sensibly and might as well save the money as you were so close. Its about hour drive away my uni will be so not too far but a bit of a trek there if your going several days a week but Im still decideing if to live on-campus or not. How did you find coping with work and the social of uni? Think I will love it once Im there but will worry endlessly before I go haha What are you doing at the moment?
    Take care, Steph x[/color]
  • He1enHe1en Member Posts: 19
    edited 30. Nov -1, 00:00
    Hi Steph
    Your course sounds very interesting!
    Applied Arts is basically all the 3D art so ceramics, textiles, glass and jewellery. I chose to specialise in Textiles and learn't a lot but looking back not the most sensible choice for future jobs haha!
    I must admit although it was cheaper to live at home, I regret not living on campus because those that did formed really close friends and knew about Uni events which the non-campus people didn't get to know about, so I didn't get that much of a social life - the course though didn't give you much free time because we were constantly hand making art - which was very costly and time consuming!!! Also my friends all live in London so not the easiest of places to get to - I hate getting tubes as I find it really tiring rushing around.
    I did find Uni life tiring at first, but it doesn't take long to get a routine going! I made sure I let the disability team at the Uni and my Tutors know that I had arthritis so that they were aware, and would be understanding if I needed to work from home some days due to pain, tiredness, stiffness etc.
    Currently I am in the process of recovering from an ankle arthroscopy which I had done in December so don't have a job at present (not that there are many out there at the moment!!) But I volunteer for the charity 'Dogs for the Disabled' so that keeps me busy in the meantime. Anyway I hope some of this helps - sorry for the information overload! I would be happy to chat through FB but I must admit I am not very good at updating it and my life is pretty boring so don't xpect anything interesting!
    Enjoy the rest of your weekend
    Helen x
  • stephibabe2stephibabe2 Member Posts: 60
    edited 30. Nov -1, 00:00
    Hey,
    Yours sounds really fun! I can see how it was alot of work though and must have been tough on your hands? Oh, well as long as you enjoy doing the textiles otherwise you may not have enjoyed the others.
    I have applied for accomadation so will wait to see if I get it - as Im under 10 miles from the uni I am bottom of the list - but would love to have the experience. As you say, when you get into a routine it will be ok. I will make sure I speak with the disability team before I go :) did you apply for dsa? (As lots of people have told me too).
    Ohh dear, was that due to inflamation in your ankle? How is it feeling now, better than before the op? Your right there is nothing out there, espcially for part time which is best for me as I find full time too much. I have been looking but nothing turned up, so have took a break from looking while I sort out stuff for a holiday and for uni. Ahh!! That sounds brilliant, I do a similar thing working at 'Waggy Tails' where disabled children work with the dogs. I absoloutly love it! Much more fun and more rewarding than any paid job. Do you have any dogs yourself? I have a little cavalier, he is 1 and called louie (:
    You have been a great help, thank you. No worries, mine isnt very either and at times give up with fb lol Oh I wanted to ask when you have a flare what happens/what meds do you have?
    I had a nice weekend thank you, hope yours was good too.
    Take care. Steph xx
  • He1enHe1en Member Posts: 19
    edited 30. Nov -1, 00:00
    Hi Steph

    I have sent you a couple of PMs but not sure whether you have received them?
    Hope you are ok

    Helen x
  • stephibabe2stephibabe2 Member Posts: 60
    edited 30. Nov -1, 00:00
    Hi Helen,

    Have you got my reply? Im so sorry for it being so late.
    I can't work out if it sent or not lol
    Hope your well xx
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