Anyone with vasculitis HELP ?????

lollyem
lollyem Member Posts: 2
edited 1. Feb 2011, 06:29 in Say Hello Archive
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Hi everyone, hope there is someone out there who reads this and can help, i am mum to a beautiful (but stroppy) 15 year old daughter. She became ill 2 years ago with really random symptoms which resulted in a diagnosis of Aorto Arteritis which is a form of vasculitis. I know that this condition is quite rare and for the last two years i have been trying to find an organisation who could maybe offer some support (with no success). Someone kindly suggested yourselves and here i am. I can find no-one else with this condition and at times i feel so alone. Medication for the time being is methotrexate injections, aspirin and amlodopine. If any one reading this has a form of vasculitis please reply to go from having a healthy teenager to a very sick one is really scary xx

Comments

  • caterina57
    caterina57 Member Posts: 1,424
    edited 30. Nov -1, 00:00
    Hi lollyem
    Sorry to hear that your daughter is ill - it must be very difficult for you. I am sorry that I dont have any experience of this problem, but, if anyone on here has they will get back to you, they are a fantastic bunch who are more than willing to share experiences, offer advice and support through good and bad times.

    I wish you and your daughter well
    Cath
  • petals
    petals Member Posts: 217
    edited 30. Nov -1, 00:00
    Hi Lollyem,

    I just had a look on MedicineNet.com There is something on there about case histories for Vasculitis.

    Personally I dont have any experience or knowlege of this condition so cant give you any advice but I am very sorry to hear your daughter is poorly with this disease. You are obviously a very supportive mum and I wish you both well, I hope you can find some answers to the many questions you must be dying to ask.

    Good luck and best wishes Petals
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I think whoever suggested us could be confusing arteritis with arthritis but we do know about meth as a fair few of us are on it. I have known someone who had arteritis in her forehead and a course of prednisalone (oral steroids) sorted that out for her. I am on meth for my arthritis and I used to take amlodopine for my blood pressure - a nasty drug that one, for me, it made me feel quite ropey (which I thought was the arthritis but not). I don't think we are quite who you need - may I suggest you post again on the LWA forum (living with arthritis)? More people look in on there than here, and you never know, there just might be someone. I wish you both well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben

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