Juvenile spondylarthropathies

i was speaking to my mom the other day and she mentioned that my condition when I was younger was Juvenile spondylarthropathies. Or something of the sorts (I've not got a clue how to spell it)

Anyway having looked up what it is and the symptoms I have realised that I am still getting some of these pains described. Everywhere I look at this, it's saying that it's under 16s that get this, I am 30 now so what would the condition be now?

I am waiting for an appointment to go to the hospital to see the orthopaedic as my knee keeps giving out and I have had to resort to ordering a walking stick to walk round on and walk round on a crutch until it arrives.

She used to claim dla for me when I was a kid, and I've been thinking about re claiming now as I find it hard to walk around the house let alone anywhere else now (also includes my bike sadly) luckily I only work a few hours a week but even that's hard for me as I'm on my feet all day. (I work in a shop so can't sit down either)

To be honest I don't know how the process is with dla or pip whatever it is and I am scared that they will turn round and call me a liar due to my age and the fact that I don't look like I have a disability of any kind. What would you guys suggest?

Thanks for any help

6 Replies

  • You need to see a rheumatologist, and preferably one with a special interest in ankylosing spondylitis. Juvenile spondylarthropathy can turn into adult ankylosing spondylitis. If your pains are AS, then the sooner you treat the inflammation the better to avoid permanent damage. Don't expect an orthopaedic doctor to know much about AS though.

  • Soooo, looks like you're not getting any treatment, is that right? If so, I'd say take this a step at a time. With the right treatment, things could improve considerably.

    The spondyloarthropathies are mainly psoriatic arthritis and ankylosing spondylitis. But there again you might have another kind of inflammatory arthritis or it could be something different altogether. earthwitch is so right, you need to see a rheumatologist.

    Orthopaedic surgeons do the mending mostly, but rheumatologists deal with inflammatory arthritis, which is what rheumatoid arthritis and the spondyloarthropathies are. With your background you shouldn't have much trouble getting your GP to refer you to a rheumatologist. I'm surprised you've not been referred already, does your GP know the whole story?

    Looking young and well is not necessarily going to get in the way of receiving the benefits you need and your local Citizens Advice Bureau can help with filling out the forms when the time comes. If you keep us in the loop you'll get loads of advice here about things like preparing for appointments as well as lots of encouragement & the benefit of others' experience.

    You sound as if you've been soldiering on for some time despite the pain. Is that because you are used to it from when you were a kid?

  • Hi there

    If your disease started under 16 then it is most probable that it would be Juvenile Idiopathic Arthritis of which there are a number of sub-types - see our website jia.org.uk - we launched our JIA service last year. Even when you become an adult JIA doesn't morph into RA it remains JIA. Please do ring our helpline - they can advise you about PIP and we do have booklets on claiming benefits. You do need to see a rheumatologist asap so go to your GP and ask to be referred. There is a lot more that can be done today to control disease and symptoms and the sooner you can get started on appropriate treatment for you, the better.

    Good luck

    Ailsa (CEO, NRAS)

  • Thanks for the replies. I went to see a rheumatologist just before Christmas, sat down with him, he looked at me as if to say what are you doing here... moved my knee around, i told him that my wrists hurt sometimes too as do my knuckles. He said i have dimples in the right places so I do not have that type of arthritis anymore.

    The reason why I asked, was I still get some pain and symptoms from the younger condition. I am waiting to hear off the hospital again and hopefully they will actually do scans and things to find out what is going on, although they will probably downplay whats going on to me as normal.

    I do just soldier on through the pain, I am that used to it that normally it doesn't bother me in the slightest, but then at the same time, I feel that I have a higher pain threshold than I should have due to being used to it.

    In regards to the AS, I have no swelling, at least not visible. I suppose I could have a little but I dont know if thats possible.

  • Are the doctors suggesting that you may have some damage left over from the juvenile condition, but no active disease anymore?

    If that is what's being said, but you don't agree and fear that the disease may have become active again, then you may need to get a bit pushy and ask for a referral to a different rheumatologist.

    Have you had blood tests to check for inflammation (ESR and / or CRP)? Are you experiencing unusual fatigue?

    I like to think that children and young people with rheumatoid diseases get great treatment quickly. Sometimes, unfortunately, adults with these conditions have to persevere that bit more.

    I hope it turns out that your disease is not active. But if you really think it may be despite what the rheumatologist said, then go back to your GP and explain your concerns.

  • I do actually feel quite tired all the time. I went up to town today on a crutch and it really took it out of me. I had to stop a fair few times. I normally ride my bike everywhere and had noticed that I was slowing down and couldn't do the distance anymore. Fingers crossed they find something that will explain it and then I know where I stand.

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