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16 Years old and has vasculitis

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ag12344
ag12344

I am 16 years old i was diagnosed with vasculitis in January 2018 it has been almost 6 months. Tried pregnisone, had an allergic reaction and suffered serum sickness. It has not gone away and we don’t know what causes it and the doctors arent much help. What are the next steps for me.

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4 Replies

  • nancyr06
    nancyr06 ag12344

    Posted

    I went to see the best rheumatologist here where I live to test me for lupus and vasculitis since my sister suffers from it and had to get amputations on her feet! She recommended Retuxin to my sister for her vasculitis to prevent it from ever happening again. 
  • michelle43915
    michelle43915 ag12344

    Posted

    Hi

    It would help to answer yiu fully if i knew what country you live in. I live in England. I have EPGA/CSS and am in tiych with people all over the world in a support group. They have saved my life many times as drs do not always know what to do. They got me a specialist.

    There are many types of vasculitis.

    My advuce fir now until i know more is for you to get on touch with one if the official help groups. In England it is Vasculitis UK and they have a free help line. Confidential. It is a charity. The help lone is manned by people with Vasculitis sime nurses too. It saved me. Details on internet. Also on closed FB too. If you in UK please telephone them asap. Perhaos with a parent or adult. Only because you are under 18. Oh they will speak with you. There are quite a few young people with it. If you are USA or Canada there are similar sites and organisations.

    As for steriods

    Yes it is rare but some of us are allergic to steriods much to the annoyance if the doctors.

    Don't panic but get onto one if these Groups asap. If on UK please phone Vasculitis UK helpline asap. The charity was set up by a dentist who has a form of the disease.

    Half the battle getting the rught diagnosis and right dr for your form of disease.

    You need a specialist asap. If you are in Scotland they have a special one too which is good.

    Stress is worst thing for our disease so get help and advice.

    Good Luck.

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