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  1. #1
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    Default New member

    Hi,i was diagnosticated with wg 4 years ago!i have done the biopsy and they found me some noduls in my lungs.i make the cures,ciclofosfamide,predisone.i have been fine these period.just the proteinuria in urine.last week i have done a tx wich see all the body if there smth is going bad.im so scared because i feel that i cant breathe fine,i cant breathe deeply...im so so scared.sorry but i can speak English well


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  2. #2
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    Default Re: New member

    Bon giorno!!?

    Welcome to the forum. Feel free to ask questions and share your experiences with our disease. I hope your breathing improves soon.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: New member

    Quote Originally Posted by Pete View Post
    Bon giorno!!?

    Welcome to the forum. Feel free to ask questions and share your experiences with our disease. I hope your breathing improves soon.
    Thank you for answering me!im scared if these noduls can come back.three years ago i have made a scanner and the result was fine,the lungs were recuperated.all these period i have done just test blood and urine.im so scared of the result.


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    Default Re: New member

    Hello Isi,

    With proper treatment, the nodules and shortness of breath gradually disappear. When I was first diagnosed, I had cavitations and nodules which caused me to have shortness of breath. I got relief from inhaled steroids.

    Do you see a Vasculitis specialist for treatment? There is a list of specialists on the Vasculitis Foundation website. If none are close to where you live, perhaps your local doctor can consult with one.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  5. Likes Alysia liked this post
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    Default Re: New member

    Quote Originally Posted by Pete View Post
    Hello Isi,

    With proper treatment, the nodules and shortness of breath gradually disappear. When I was first diagnosed, I had cavitations and nodules which caused me to have shortness of breath. I got relief from inhaled steroids.

    Do you see a Vasculitis specialist for treatment? There is a list of specialists on the Vasculitis Foundation website. If none are close to where you live, perhaps your local doctor can consult with one.
    All these period i have been on treatment.the analysis of blood going well and the doctors reduce the predisone on 2,5.at first when i was diagnosticated i didnt have problems with breathing.i have them now.im so scared if everything is coming back


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    Default Re: New member

    Welcome to the forum isi. Where are you from ? What language do you speak ?

    Dont be afraid, even if the nodules came back, you can get a treatment for them and get well.

    It might be that you dont breath well not only because of your lungs, but also because of anxiety. You can check it, if you distract your attention from your health issues, and try to do something fun, like listenning to good music or watching a good movie, and then to check if your breathing got better when you were not worried.

    Hang in there and keep on writing. You are not alone. We understand how it feels.
    Last edited by Alysia; 10-21-2017 at 08:33 PM.
    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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    Default Re: New member

    Thank you dear!im from albania but im in Italy now because all the treatments i do here.i have 10 days that i have make the scanner and all this days i have been so bad,cant think about smth else,im so afraid.i dont want to eat nothing,control my breathing.if nodules came back can any values shows these in the analysis of blood.thank you so much Alysia!


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  9. #8
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    Default Re: New member

    Quote Originally Posted by isi92 View Post
    Thank you dear!im from albania but im in Italy now because all the treatments i do here.i have 10 days that i have make the scanner and all this days i have been so bad,cant think about smth else,im so afraid.i dont want to eat nothing,control my breathing.if nodules came back can any values shows these in the analysis of blood.thank you so much Alysia!


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    If the nodules did come back, then it means that the Wegeners' is active. You can know that wg is active according to some of the blood tests although it is not allways the case. Also some symptoms can tell if wg is active.

    In the blood tests when wg is active we might get some of the following:
    Pr3 positive, C-anca positive
    Crp above the normal, ESR above the normal
    Hemoglobin under the normal, low fe-iron
    Creatinine much above the normal if one has kidneys involvement

    Do you have any labs results ?

    Other symptoms which might show WG activity:
    nose bleedings and crusting
    Joints pains
    Ears pains
    Red eyes
    Gums bleeding
    Fatigue
    Rash
    Night sweats
    Low fever

    Do you have any ? Or others ?

    Try to relax and enjoy being in Italy, its a beautiful country. Take a deep breath of some mediterranian breeze if you are near it.

    Zoti tė bekoftė!
    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.

  10. #9
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    Default Re: New member

    You are sooo sweet.I dont have any of these symptoms.i just have these fatigue of breathing deeply and im not hungry.im really stressed.i have the labs results of 10 days ago.i have just the pcr a little high 0-30 i have it 40.i cant be relaxed and i cant enjoin anything.you dear speak english?how sweet you are


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  11. #10
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    Default Re: New member

    Thank you. I speak Hebrew, but can also speak English with funny accent I wrote you the blessing in albanic copying it from the google translate.

    I am glad that you dont have other symptoms and that the labs are mostly ok.

    As far as I understand, pcr is a test to check some infections - virus or germs. Did they tell you what they are looking for in this test ?
    Can it be that you cant breath well enough, because you have lungs infection ? Are you coughing ?

    Being worried cant help. Try to think about positive issues. pray. God hears our 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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