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Thread: Me too - New GPA diagnosis. High Anca titer

  1. #21
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    Thk you alysia, I appreciate your prayers! 🙏🏼 feeling a bit down about dx of GPA - reality sinking in. Questions and uncertainty arising. I follow up at MGH (mass gen'l) rheum on wed.

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    Hi Gabrielle, I keep coming across ur post, and i just wanted to say hi and hang in there. I am 32, and was dxed at age 16. I have 2 children ages 10 and 6. They are my inspiration as is my wonderful husband. But having a disease like this can feel sometimes just too much when i think about what it mite do to my kids when im not here anymore. I use to pray that i just stay here long enough that they will remember me. Then when i past that i changed it to-just til they are old enough to handle it...i dont know if that time ever comes, but you know what-i dont worry about it as much anymore. I just try to make the time we have together count...after all who knows, maybe we will be here longer than we think! Im glad you have good docs! If you have any questions im here. Ive loved having this forum to come to. I didnt find it until i had wegeners 13 years already...its been so great hearing others victories, and there are some great encouragers on here !

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    Thank you ImSoBlessed! I love your forum name I'm really trying to hang onto my Faith and trust in God's love and Perfect plan for me (and His perfect plan my hubby and daughter) you have had this disease a long time! Are you generally in remission? When you are in remission do you almost feel normal? Well normal for a busy wife /mom. 😊 I felt better yesterday than today. Today my breathing was never free and easy. I have 3 granulomas (3+cm sizes) and 2 nodules in my lungs. Hopefully already starting to shrink. My ears (the first symptoms I had) no longer are painful. Just feels like they are inflamed and stuffed up. And I have runny nose/sore throat. So my breathing is the thing that bothers me the most now. I'm puffy from the prednisone but amazingly not crazy moody this last week even tho I'm at 60 mg. right now. My nearsighted eyesight isn't what it was a couple months ago but not enough to change glasses Rx yet. I guess I'm both thankful to finally get a diagnosis and the reality of this is starting to sink in now too.
    What I know to be most true tho is God is Love.
    Thx again for reaching out to me.
    Gab

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    Hi Gab, I feel like i am very blessed...my gpa was very bad and life threatening in the beginning. I had kidney involvement plus the sinus and ALOT of joint pain. But after my initial treatment of cytoxen and 60 of pred for several months, I have never had it as serious.When im in remission, yes, i feel i live mostly normal...more fatigued than my friends, but im able to keep up mostly. I would say at that point it depends how much pred u have to take(i have been off between flares) because the side effects of that med can make life feel not normal. I was so young when i was dxed and very nieve. I dont remember being scared, because i had no idea what we were actually dealing with. I think it was another blessing for me to be so young...its just part of me now and i didnt have to readjust my adult life to handle gpa. It sounds like you have a Rock to hold on to...and i believe you will be just fine too. When you feel you cannot take one more day, just look back to the time when you got dxed, and all you have gotten thru since, you will realize then you can make it another day. I love chatting with you. Praying for you too, God will give you peace.

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    Not sure if I told you all, the lung biopsy was positive for GPA. No surprise there based on all othe symptoms and tests... But I guess it's 100% dx (rather than 99.9).

  6. #26
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    Quote Originally Posted by Gab122 View Post
    I guess I'm both thankful to finally get a diagnosis and the reality of this is starting to sink in now too.
    I believe that most of us said what you just did at one point or another--especially those of us who went for months/years without a diagnosis!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    Gab - diagnosed in November 2015 but as I mentioned this probably began 3 years ago with hearing loss and vision loss occurred in October of last year.

    I read you are going to MGH on Wednesday (tomorrow) - I am heading in to MGH today - we miss each other by one day! I hope all is going as well as it can be - take care.
    Last edited by Middlesista; 08-16-2016 at 10:02 PM.

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    We Shd plan infusions together if the time tables coordinate. I'm thinking of asking to get infused with a bit of sweet, sexy and smart... Along with my retux when I go back for 2nd inf on 8/25. LOL. Wouldn't that be nice?! I am getting it done at MGH dr. Niles office even tho I'm an MGH rheumatology pt. technically. That's who had space for me to get in right away last time. It's nice there- spa like - what's the infusion center like at MGH rheum?

  9. #29
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    Quote Originally Posted by Gab122 View Post
    I'm thinking of asking to get infused with a bit of sweet, sexy and smart... Along with my retux when I go back for 2nd inf on 8/25. LOL. Wouldn't that be nice?!
    I tried that already, that is one of the listed side-effects of RTX--you know the treatment consent for you sign. (-8 --"...no other add-ons, neither expressed or implied..." I was going for smart, funny and healthy, but alas...

    Thanks for the smile today Gab! I needed that!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


  10. #30
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    Gabrielle - my main RA is out of Lahey so had infusions out of there. I see RA from MGH as second opinion and because MGH is listed as vasculitis speciality center. I want to make sure both RAs are on "same page" as far as rx. Lahey was were I was diagnosed

    Right Mike - hope for side effect from RTX for all = HEALTHY!!!

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