Living with RA

Cowboy_banjo
Cowboy_banjo Member Posts: 2
edited 16. Aug 2025, 14:10 in Young people's community

Hiii I’m Cal,

I’ve had RA since 15, first diagnosed with JIA, and mostly seen as RA now, I’ve move many different hospitals since then been told Im faking it and overall been neglected by the NHS,

I’m now 20, recently moved to Brighton had my first appointment with my new specialist yesterday which went pretty well, the specialist decided I should start fresh, as once again my meds don’t do enough, I’ve been on like 6+ different meds so that will be fun

I’ve always felt pretty lonely and isolated with it, I’ve never met anyone my age with it and overall just kinda need someone who gets me, so I’d love if anyone wants to reach out around my age if you live close to Brighton we could catch up or something, mostly would just be great meeting others with it,

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Comments

  • chrisb
    chrisb Moderator Posts: 809

    Hi @Cowboy_banjo,

    Welcome to the versus arthritis forum.

    It must have been very frustrating for you. I hope that your new specialist is able to help you move forward positively.

    Similarly, I hope that joining our forum brings you into contact with others who can relate to your journey and perhaps provide some support.

    Best wishes

    ChrisB (Moderator)

    Need more help - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • annabanana
    annabanana Moderator Posts: 170

    hi @Cowboy_banjo , I can definitely relate a lot to your experience; also DX with JIA at 15 and now RA at 20, also definitely with the feelings of feeling neglected by the NHS. Have you discussed biologics with your rheumatologist? They're the first medication I’ve found to make a difference - however everyone is different. Wishing you the best of luck!

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • Cowboy_banjo
    Cowboy_banjo Member Posts: 2
    https://community.versusarthritis.org/discussion/comment/736943#Comment_736943

    honestly uh I’ve been on here is the list :)

    methotrexate both injections and medicine

    About 5 steroids

    Infusions wise I’ve been on

    Uhh inflixmab

    Rituximab

    At the moment I’m on baricitinib which is just a thing I take everyday however it doesn’t do anything really-

    I’m also on two strong pain meds if I flare, tho honestly nothing works for me- as my RA keeps getting worse :)

    I can’t spell any of these names haha, but it’s honestly a long list it sucks the NHS neglected you it makes you feel really worthless

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