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  1. #1
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    Default Lung Flare

    I'm in the hospital, Thursday morning I coughed up blood. Dr. sent me in for blood work and a cat scan. I was admitted and had another procedure where they inject ink into your lungs and scan them front and back. I was swabbed in the emergency room for Covid and again yesterday, they did it twice because you could have a false negative. I'm ok the second one came back negative. It's Saturday and they're trying to figure out if it's an infection or Wegeners.
    I spent the Fourth of July in the hospital 4 years ago with Kidney failure. This time it's not affecting them, thank God! And by the way I got bit by a cat last year on the Fourth, spent 5 days here for that.. lol. Anyway has anyone experienced lung issues, and can you please share what happened? Thank you for letting me vent!! Happy Fourth of July everyone!

    Sent from my XT1650 using Tapatalk
    Last edited by Dorothea; 07-04-2020 at 10:58 PM. Reason: Lung Flare?

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  3. #2
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    Default Re: Lung Flare

    A lot of people like to get away for the holidays- but not like this! It sounds like they are giving you a good work up and hopefully get things figured out for you soon. Cat scan information should help decide what is what. It's been too long ago that I had lung issues so I'm not much help. I hope you can get treatment and go home soon and start to mend.

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  5. #3
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    Default Re: Lung Flare

    If the Wagner's attacks your lungs then coughing up blood can occur. It can make breathing very difficult too. There are other medical issues that can cause you to cough up blood which your doctors will undoubtedly rule out.

    When I was initially diagnosed I had damage in my lungs and my kidneys from the Wagner's attacking those organs.

    Best wishes for a quick diagnosis and effective treatment so you can recover soon.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Lung Flare

    Thank you for your response! Have a Happy 4Th!!

    Sent from my XT1650 using Tapatalk

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    Default Re: Lung Flare

    This time Wegeners didn't go after my kidneys, they do believe it is Wegeners. I was supposed to start Retuxin treatments before this happened, that will be the next step!! Thank you for your input!! Have a nice holiday!

    Sent from my XT1650 using Tapatalk

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  11. #6
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    Default Re: Lung Flare

    When I first had WG it was over 40 years ago. Joints, sinus , kidneys etc- but NO lung involvement. I was in the hospital for several weeks waiting for CTX to kick in as I was in very bad shape.
    After twenty years of drug free remission the WG returned. This time NO kidney involvement and lots in the airways- lungs and trachea. lt is a mysterious disease.

    The usual protocol , I think , is to have Rituxan every six months. This does not work for some people as they relapse ahead of schedule. Some people, like myself, do it on a 4 or 5 month schedule.

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  13. #7
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    Default Re: Lung Flare

    Good luck to you too!! I will be getting Retuxin every 6 months. I hope all is fine with you now! Be safe!!

    Sent from my XT1650 using Tapatalk

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    Default Re: Lung Flare

    What is your treatment plan for the next month? I'm curious. If I would guess I would say increased prednisone maybe 40 or 50 mg- or possibly more for the next month as you wait for the Rituxan to kick in.
    Then , after a month goes by you start reducing the prednisone as you are able to. -- How did I do?
    I hope you've made it back home now. Hospital food these days is pretty good but I doubt they will have 4th of July food- hamburgers, corn on the cob, corn bread, bbq beans. Prednisone will have you thinking about food more than usual- like it is for me.

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  17. #9
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    Default Re: Lung Flare

    Dorothea,
    I am thinking positive thoughts and sending prayers your way.
    Sounds like you are handling this very well. Comes with experience.
    Is your family allowed to visit you? I know with the pandemic hospital visits have been limited. Glad to hear you are getting your Rituxin soon. Like @me2 said once that kicks in you should be getting better.
    I was just thinking everyone seems to be going a little crazy with lockdown and social unrest, but when an individual health crisis hits us, nothing else seems relevant.
    This is a darn crazy disease. At least Andrew has provided us with this site where we can vent and find support.
    I donít know if you have your appetite, but I am sending you some Ďvirtualí BBQ spare ribs and a coconut cream pie. So I know itís not health food, but occasionally we need a little comfort.
    Hope you are home soon.
    Keep us posted.
    Masha

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  19. #10
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    Default Re: Lung Flare

    Hi Dorothea,

    Are you still in the hospital ? How are you doing ?

    During my first lungs flare, I was addmited to the hospital with bad coughing, non stop fever, night sweats. I never coughed up blood but I know other weggies do. I did coughed up white staff which looked like cottage cheeze. Soon after my nose started to bleed. Blood tests showed anemia, highly elavated ESR and CRP, positive C-anca and pr3.

    At another lungs flare I had more abnormalities in my blood tests. At another lung flare the labs were normal.
    Such a weired disease.

    At the last flare which started with the pandemic, I have started buduzon inhalations daily, which help me greatly to stop coughing and to breath better.

    Rtx works great although only after about 1-2 months.

    Sending you prayers.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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