Hello everyone! Diagnosed with Wegeners in my early 20s

Hi everyone! My name is Pryana and I’m 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, it’ll mark 5 years since I’ve had this. For me, my manifestation was scleritis. I woke up once morning with a very red eye. I didn’t 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 wasn’t getting better, then days turned into weeks and that’s 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, there’s 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 “limited” Wegeners, thankfully my lungs and kidneys aren’t involved. Only my upper respiratory tract. Throughout the years, I’ve 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 didn’t like that so my doctor switched me to Cellcept and I’ve 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, that’s when I went to get seen. So that’s my story! Currently taking Cellcept which seems to work well for me. I’m looking forward to reading everyones stories!

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Originally Posted by anabanana

Hi everyone! My name is Pryana and I’m 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, it’ll mark 5 years since I’ve had this. For me, my manifestation was scleritis. I woke up once morning with a very red eye. I didn’t 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 wasn’t getting better, then days turned into weeks and that’s 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, there’s 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 “limited” Wegeners, thankfully my lungs and kidneys aren’t involved. Only my upper respiratory tract. Throughout the years, I’ve 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 didn’t like that so my doctor switched me to Cellcept and I’ve 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, that’s when I went to get seen. So that’s my story! Currently taking Cellcept which seems to work well for me. I’m looking forward to reading everyones stories!

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Welcome Pryana! I’m sorry you got diagnosed with this disease but happy you are here!
Natty


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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 that’s not the case. Wishing you the best!!


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Hi Pryana , I am also recently diagnosed with weg , currently my major symptom is sceleritis in one eye I.e eye redness pain swelling blurred vision mine all starter with ear, I was given ritxamab a month ago and currently on 15 mg pred. Full day work fine but I still get some redness and pain in morning how long does it take your eyes to settle down?

I had alot of issues with my left eye, redness and could not see well when light was bright (monitors and sun) it hurt alot and teared... eye doctor gave me drops both antibiotic and prednisone drops, it took about 2/3 months to completely resolve. We had to wait for the GPA medications to work.
The eye doctor is who actually diagnosed my GPA. My symptoms started with sinuses, eye, then hearing. ENT did not know what was wrong, when the traditional eye medications did not work, my eye doctor knew it was systemic and had ENT order labs to confirm the Diagnosis. - I owe the eye doctor to early diagnosis. This illness presents itself differently in everyone and can change. It is odd. This is my experience.
Do all your doctors say, (and be your own advocate - my doctor is impressed with my research) learn what you can, take very good care of yourself. - and even though it stinks - trust that in time you will be feeling better and better. I rest when I need to, and try to eat well, not perfect but well.
It takes time for infusions to work and symptoms to clear.
I wanted instant wellness, but it took time. I feel good today and that is what is the most important - enjoy the present moment, it works for me.

Thanks kathy I had all the same symptom you had , for me it took almost 3 month for diagnosis and in starting there was no headache but after my last flare-up I start getting these sensation in head , not sure if these are due to steroid or anxiety I am just waiting for ritxamab to kick in it has been 45 days now from infusion.
And same here I also wanted instant wellness as I went short term disability because of it. Hopping to get better and happy to hear about your recovery