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Thread: Hello everyone! Diagnosed with Wegeners in my early 20s

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    Default Hello everyone! Diagnosed with Wegeners in my early 20s

    Hi everyone! My name is Pryana and Iím from California. I recently just found this page so I thought I would join in and share my story with you all! I was 23 when I was diagnosed with this disease. In January, itíll mark 5 years since Iíve had this. For me, my manifestation was scleritis. I woke up once morning with a very red eye. I didnít think anything of it, I just assumed it was conjunctivitis because I had no pain or anything else. A few days went by and it wasnít getting better, then days turned into weeks and thatís when I started to have really bad pain, so bad that it woke me up in the middle of the night. I went to the eye doctor and he diagnosed me with scleritis, and as many of you know, scleritis rarely occurs by itself, thereís usually always something underlying going on so he ran a bunch of tests and I had a very high ANCA and thus I was diagnosed with GPA. I have what they call ďlimitedĒ Wegeners, thankfully my lungs and kidneys arenít involved. Only my upper respiratory tract. Throughout the years, Iíve have scleritis flare ups here and there. In the beginning I was put on a high dose of prednisone and after, had started methotrexate but I guess my liver didnít like that so my doctor switched me to Cellcept and Iíve been doing good so far with it. During flare ups, my doctor will prescribe me prednisone and I absolutely hate it because once I had every side effect imaginable from that drug so I like to call it the devil drug lol. Before I was formally diagnosed, I had other symptoms like recurring nose bleeds and extreme fatigue, but once I had the eye symptom, thatís when I went to get seen. So thatís my story! Currently taking Cellcept which seems to work well for me. Iím looking forward to reading everyones stories!

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    Default Re: Hello everyone! Diagnosed with Wegeners in my early 20s

    Quote Originally Posted by anabanana View Post
    Hi everyone! My name is Pryana and Iím from California. I recently just found this page so I thought I would join in and share my story with you all! I was 23 when I was diagnosed with this disease. In January, itíll mark 5 years since Iíve had this. For me, my manifestation was scleritis. I woke up once morning with a very red eye. I didnít think anything of it, I just assumed it was conjunctivitis because I had no pain or anything else. A few days went by and it wasnít getting better, then days turned into weeks and thatís when I started to have really bad pain, so bad that it woke me up in the middle of the night. I went to the eye doctor and he diagnosed me with scleritis, and as many of you know, scleritis rarely occurs by itself, thereís usually always something underlying going on so he ran a bunch of tests and I had a very high ANCA and thus I was diagnosed with GPA. I have what they call ďlimitedĒ Wegeners, thankfully my lungs and kidneys arenít involved. Only my upper respiratory tract. Throughout the years, Iíve have scleritis flare ups here and there. In the beginning I was put on a high dose of prednisone and after, had started methotrexate but I guess my liver didnít like that so my doctor switched me to Cellcept and Iíve been doing good so far with it. During flare ups, my doctor will prescribe me prednisone and I absolutely hate it because once I had every side effect imaginable from that drug so I like to call it the devil drug lol. Before I was formally diagnosed, I had other symptoms like recurring nose bleeds and extreme fatigue, but once I had the eye symptom, thatís when I went to get seen. So thatís my story! Currently taking Cellcept which seems to work well for me. Iím looking forward to reading everyones stories!
    Welcome Pryana! Iím sorry you got diagnosed with this disease but happy you are here!
    Natty


    Sent from my iPhone using Tapatalk

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    Default Re: Hello everyone! Diagnosed with Wegeners in my early 20s

    Hi Ana banana!
    Welcome to the group! I find a lot of comfort in this forum, and even more knowledge. Sounds like the GPA may be smoldering again if the nose bleeds have started back. Hoping thatís not the case. Wishing you the best!!


    Sent from my iPhone using Tapatalk

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