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Thread: Greetings Everyone!

  1. #1
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    Cool Greetings Everyone!

    Hi Everyone, I was recently diagnosed with GPA. Roughly six months ago, my left eye became bloodshot, my ears got clogged up and my nose got runny all the time. I did not worry too much, becuase the eye didn't hurt, I often had fluid in my ears due to lots of flying (for work) and many years of swimming and surfing, and I thought the runny nose was from early morning hikes. However, I did begin to lose significant hearing, for which I saw an ENT doctor (who did fix most of the symptoms), and the eye became irritated, for which I saw an opthamologist. My Opthamologist diagnosed me with scleritis and sent me to a rheumatologist, who did blood work and gave me the diagnosis. He's had me on predresone which seems to ease the symptoms but not really address the issue. We did try methotrexate which helped a little, but I started coughing, so he took me off it. We tried aziopirothene (sorry if I'm butchering the drug names), but it did nothing and I had a setback that put me in the hospital last weekend. I had fever, headache (whole head, not just eye area), nausea, ears clogged and runny nose) they stabilized me and now the doctor is putting me on rituxan. I'm waiting for the insurance company to give approval. That is where I'm at. This is a new world for me. 57 years old, no major illnesses, never really taken medication, so I don't know whether to laugh or cry. I am thankful. Many are far worse off than me and I realize that, so now begins my journey blundering through this thing. Looking forward to meeting and chatting with you guys. Have a great evening!

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  3. #2
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    Default Re: Greetings Everyone!

    Hello jrslim,

    Sorry to hear you got diagnosed with GPA.
    I hope your insurance company approves your treatment, and that you 'll soon feel better.
    Keep us posted how you're getting along...
    Living with WG/GPA since june 2010...

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  5. #3
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    Default Re: Greetings Everyone!

    Welcome @jrslim ;!
    It’s a weird land of things when you find out you have Granulomatosis with Polyangitis or Wegeners…. Whichever you chose to go by. It can feel overwhelming for sure. I can say without a doubt this forum has helped me over the last year. I was diagnosed in February of this year. That was after years of being ill and having no idea why. If you have questions, ask… there are lots of helpful friends here. Also, search any little thing( like a medication name) and it will pull all of the linked chats. There’s much to be learned that way. Best of luck to you in this new journey. It’s not all bad..the disease is… but we gain much from our experiences with it. There are many compassionate people that will come along and make it that much easier!

    Love and light,
    Ashley


    Sent from my iPhone using Tapatalk

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