Hello

Crystalis79
Crystalis79 Member Posts: 2
edited 10. Apr 2018, 12:37 in Say Hello Archive
My name is Crystal and I was diagnosed with Adult Onset Still Disease 16 years ago. With the help of medications and one hip replacement (right hip), I was doing pretty good and thinking I could just ignore my disease, or pretend it was just arthritis in one joint. What brought me here is that I am now contending with three major joints that like to act up now and then, (left hip, left knee, and right wrist) and I have recently started having mild to moderate fevers daily. I forgot that Stills was more than just arthritis.

Anyway, I am here to get some perspective and some support, and to provide support and validation as I can.

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hello Crystal and welcome to the forums from the moderation team.

    I am very sorry to hear about your Adult Onset Still’s Disease which seems to be causing you trouble at the moment. It sounds as though having 3 major joints playing up has hit you hard as well as having frequent raised temperatures.

    I hope this isn’t ‘teaching my Grandmother to suck eggs’, but attach a link to Arthritis Care’s information about Adult Onset Still’s Disease (AOSD) which might be worth a read:

    https://www.arthritiscare.org.uk/do-i-have-arthritis/publications/226-adult-onset-stills-disease

    We have a great community here, who have lots of experience of arthritis, I know they will make you very welcome and help in any way they can. Your experience will be, in turn, very helpful to others.

    I look forward to seeing you posting in future.

    Best wishes

    Ellen.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. I began with psoriatic arthritis back in 1997 and then OA was diagnosed in 2011, I've gone from one affected joint to around forty, all useful ones.

    What treatment are you currently taking? It sounds as though things are not under the right level of control at the moment, I am presuming that AOS is an auto-immune arthritis, do you see a rheumatologist? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Hello and welcome. Officially I have Stills Disease - not Adult Onset as I began aged 15 - but these days we all, docs included, just call it RA. With no proper DMARDS back in the 1960s, it got out of hand but now, 2 hips and 3 knees later, I'm doing well on methotrexate and hydroxychloroquine. What do you take? It sounds as if yours is not currently well-comtroled. Perhaps you could ring your rheumatology helpline for advice.

    Please keep in touch though I won't for a day or two as I'm about to set off for home from Los Angeles and my brain usually arrives some days after the rest of me.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright

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