Chronic Jeuvenile Arthritis....

wibberley
wibberley Member Posts: 421
edited 30. Nov 2009, 05:14 in Living with Arthritis archive
....in middle age!

Is there anyone else on here who was diagnosed as a child (I was 7) and is still suffering relapses (I'm now 43)?

I've been incredibly fortunate not to have been that bothered by relapses but am concerned that this one may not be so short-lived, so would be grateful to hear how others with this diagnosis in childhood have fared.

Comments

  • stephibabe2
    stephibabe2 Member Posts: 60
    edited 30. Nov -1, 00:00
    Hi, I was dignosed when I was 5 with Cronic Jeuvenile Arthritis. Is your the systemic on-set ? This is what I have.

    I had my last relapse or flare as I call it in 2005, I am now 17 and are currently having a 'flare' although this is much worse than any other. I guess I am very lucky to have gone from that time till now without having a flare. I was wondering what symptons you get during a flare ? As I do not any one who has a simlar type of arthritis. During flares I get high tempretures, rashs and the obvious pain etc. in all my joints, some which you dont even think of lol. However during this recent flare I also suffered with pericarditus (which I know isnt spent right) but basiacally is inflamation around the heart. Have you ever suffered with this ?

    At the moment I am seeing my doctor every week to hopefully get it under control, I was wondering what medication you are taking? Also I was wondering if when you transfered from childrens reomotolgy to adults did you find this difficult?

    Sorry to ask lots of questions, Hope to hear from you soon

    Steph x x
  • clairy
    clairy Member Posts: 29
    edited 30. Nov -1, 00:00
    Hi,

    I'm only 21 but have had my arthritis almost constantly bar 1 year since i was diagnosed. Unfortunatly not everyone grows out of it. There is lots of drugs out there now a days that can control you arthritis well.

    I hope it isn't too long lived for you.
  • wibberley
    wibberley Member Posts: 421
    edited 30. Nov -1, 00:00
    Thanks for your replies Steph and Clairy.

    Mine was diagnosed after a fall - they at first thought I'd broken my arm as I couldn't move it, but after it failed to heal they realised I had chronic jeuvenile arthritis (stills disease). I was unable to go to school for some time as in those days they weren't equipped with lifts etc. Also had to have a piggy-back from dad when I went upstairs as climbing stairs was impossible!

    However, that died down and the only residual problem was being unable to kneel or squat (shame....no gardening jobs then :) !). My next big flare happened when I was around 22. At that time I was given volterol anti-inflammatories and steroid jabs when joints (usually the knee) needed it. That lasted probably a couple of years. Now, aged 43, it's reared its' ugly head again!

    My cousin hasn't been so lucky. She was diagnosed aged 15 and really hasn't had a break from it.

    Reading your replies really has brought home how differently one disease can affect us. I've been lucky, very lucky in fact as I've not lived the best of lifestyles, whereas my cousin has never over-indulged the old sugar, wine etc yet has suffered more.

    Good luck to you both - dealing with arthritis at such a young age is not fun but treatment really has come on leaps and bounds - I still can't touch milk or jam as that's what they mixed my medicine with to help keep it down.......and it didn't work!!!

    Lois x
  • wibberley
    wibberley Member Posts: 421
    edited 30. Nov -1, 00:00
    Sorry Stephi I didn't answer your questions!

    I'm not sure if my arthritis is systemic or not? You are very lucky to have such a pro-active doctor who is monitoring you so well. I've had very little monitoring which has frustrated me greatly! When it came back aged 22, I was quite ill with it but I don't remember a rash? This time round I'm not at all ill, just tired and fed-up at not being able to rush around like I used to (have 3 Xmas-mad kids so lots going on!).

    Because I was pretty much symptom-free from the ages of around 9 to 22, I wasn't really around the hospital much for arthritis at 15 (which is when I moved up to the 'big' hospital!). However I did first see my Rheumatologist at 15 as I kept dislocating my knees - probably have weak musles there from not using them to kneel etc). He is still my consultant now!

    It's not at all unusual to feel nervous about moving up to the adults hospital - very different environment. Like I said earlier, your doc sounds great so try to do as much through him/her as you can.

    Lois x