Takayasu arteritis

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Suzueq47
Suzueq47 Member Posts: 4
edited 17. Jun 2025, 10:39 in Living with arthritis

Hi there just wondering if anyone out there has takayasu that can share their experience with the condion with me. I was diagnosed in Nov 24 with it but just a week or so of being diagnosed I took another bad stroke that has affected my sight. I've had at least 4 strokes within a year of my first one Jan 24. Any feedback would be so much appreciated. Thankyou x

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  • olivia_b
    olivia_b Moderator Posts: 103

    Hi @Suzueq47,

    Welcome to the Online Community, we are so happy to have you hear and I hope you find the platform a welcoming space.

    Hope you are doing well and I am sorry to hear about the issues you’ve been experiencing with this condition.

    While I have not had personal experience with takayasu, those who work for our helpline may have more experience or resources to assist you.

    You can contact our helpline on 0800 5200 520 or helpline@versusarthritis .org

    I truly hope this route can assist you and give you the support you need.

    Take care, Olivia x

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

  • Suzueq47
    Suzueq47 Member Posts: 4

    Thankyou very much for replying. I will give the number you gave me a call.

  • Poppyjane
    Poppyjane Moderator Posts: 934

    Hi @Suzueq47

    I found this link I hope it might be interesting for you

    https://www.versusarthritis.org/about-arthritis/conditions/takayasu-arteritis/

    Best wishes

    Poppyjane

    If it would be helpful to talk to someone ring the Helpline 0800 5200 520

    Monday - Friday 9.00a.m. - 6.00p.m.

  • Suzueq47
    Suzueq47 Member Posts: 4

    I have been on the the site for TA. I just don't feel it tells you of symptoms you can have or how you may feel ect. I feel rubbish every day and it is very soul destroying. I have 3 children, Twins at 18 and a 13year old. Thankfully not younger as I can't look after them. Wish I knew things do improve as some form of life would be good. Sorry for negative post folks but if you could or would like to tell me how you feel on a daily basis I would appreciate it. Thanku. X

  • Ellen
    Ellen Moderator Posts: 1,993

    Just wondered whether you had seen this post @Suzueq47

    https://community.versusarthritis.org/discussion/62492/new-vasculitis-diagnosis

    I don't know whether it's at all relevant to your condition, but @shez61 has been active on the forum this year so might see this post and respond.

    I am so very sorry you are feeling so isolated. People here can certainly share their experience day to day with arthritis, Strokes though are slightly different and Takayasu is so rare. I had a look on the Stroke Association's forum and put Takayasu in there and there is someone who has posted. I myself had a TIA a year or so back and found the forum to be very supportive.

    https://onlinecommunity.stroke.org.uk/

    My best wishes

    Ellen.

  • frogmorton
    frogmorton Member Posts: 30,433

    Hi @Suzueq47 I do not have the same condition but had a TIA in April '24.

    I am wondering how much of your difficulties are due to the strokes and how much the arthritis aspect?

    Two other forum 'friends' on here have also had strokes, but we all just have a plain old inflammatory arthritis each (all different) though similar meds.

    Post TIA I was very tired and struggled to stay awake or function luckily I had no physical consequences personally so consider myself very lucky.

    Might be worth looking at the stroke forum Ellen suggested as there is a real person who has the same condition as you.

    I am sorry I am not much help, but send you some ((()))

    Toni x

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