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Thread: Recently diagnosed with GPA

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    Default Recently diagnosed with GPA

    Hello all 😊
    My name is Mandy
    Iím 53 mum of 5
    Nanny to 5
    From Hobart Tas Australia

    My year 2020 started out with an ear infection in late February, mid March it had got extremely bad with hearing loss, by late April I was in excruciating pain with infection getting worse, end April I had grommets put in my ears, 7 dayís later I was admitted to hospital to have iv antibiotics during my 14 day stay I had many scans blood tests and a biopsy on a lymph node that had become very red sore and swollen, on my 10th day they tried me on some iv steroids, which improved my hearing and my pain finally got bearable, day 14 I was able to go home,
    Each day at home I got increasingly worse even the Endone I was one was now making me sick as well so I had to stop that, By day 5 I was in the worst pain Iíve ever had ( and Iíve had 5 children) I was sent back to hospital and Put back on Iíve prednisolone, the next day May 27th 2020 they had the biopsy results and some blood results back and yes I was told I have Granulomatosis something I had never heard of before
    Then came more scans X-rays blood test
    It turns out my disease has affected my ears/ hearing my sinuses I have narrowing of my trachea and nodules on my lungs
    I have had 2 rubimax infusions 8 and 6 weeks ago, my hearing has gone from my left ear and I have very little in my right
    Iím hoping hearing aides will help but canít get them till the infection has completely cleared which we are finally getting there
    Other than my hearing loss shortness of breath and fatigue Iím not coping too bad,
    I do have very low and emotional days
    I have not bought myself to reading much up on the disease just yet Iím not quite ready, but I think this forum is going to be a good starting point

    Sorry about the small novel
    Itís just good to be able to talk about it to others who may understand

    Love to all
    Mandy ❤️

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  3. #2
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    Default Re: Recently diagnosed with GPA

    Welcome Mandy,

    Welcome to the club, sorry as that may sound. I don't have the GPA condition, but my son does, so I somewhat live with it as well.

    I'm really sorry to hear about your situation. This disease affects people in many ways. Ears, lungs, sinus, bones, skin rashes, you name it. Sounds like the rituximab and the steroids is having a positive effect on you, that's good. Rest up, feel good, head up, be there for your children. This forum is great with people offering all types of good advice and suggestions, and mostly, listening and compassionate ear.

    Godspeed to you.

    Sent from my moto z4 using Tapatalk
    Last edited by Aneinu; 07-29-2020 at 01:25 AM.

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    Default Re: Recently diagnosed with GPA

    I wonder if any of our forum members had ever heard of Wegener's granulomatosis or granulomatosis polyangiitis before they got the diagnosis. I know my response was what's that?

    My hearing loss from Wegener's granulomatosis was one of the factors that significantly impaired my quality of life. I could not get my BAHA installed until I had been considered in a stable remission for at least a year. During that time I was very hearing impaired and my speech deteriorated which I thought at first was due to my time in intubation. But when I was being checked out for getting my BAHA the ENT doctor explained to me that when you can't hear your speech deteriorates. The BAHA greatly improved my hearing and quality of life although my hearing is still poor compared to most people with normal hearing. They also have new procedures for installing BAHA's which are less intrusive and therefore can be done much sooner. You might qualify for getting one if you lost your hearing in one ear.

    I had substantial damage to my lungs and kidneys from the Wegener's, but after several years the nodules in my lungs seem to get better or disappear. Unfortunately being immunosuppressed has resulted in several incidents of bronchitis and pneumonia which has caused more lung damage. My kidney function also improved considerably although it is still very substandard compared to normal kidney function.

    I have never heard of GPA being diagnosed from a biopsy on a lymph node and to me that is an impressive sign of progress in the medical field in recognizing and diagnosing our rare disease. I have had some swollen or lymph nodes recently and they were attributed to a skin infection, but in hindsight I suspect now they were just another one of the residual side effects of my GPA that fluctuate in severity along with nosebleeds, post nasal drip, fatigue, inflammation of my eyes, and joint pain. The symptoms seem to often come and go and sometimes require an increase in my prednisone medicine to get them back under control.

    Best wishes for improvement in your health conditions as you learn to adapt to the changes brought about by the GPA. Feeling down about the changes in the quality of your life is a natural reaction to the loss and many of us required some counseling or mental health help to deal with this adjustment. I found it very helpful for me when I was in the rehab hospital.

    I believe the best way to learn about how GPA has affected and will affect you is to have a good healthcare team that is knowledgeable about the aspects of GPA and can help you learn to recognize and manage the symptoms that occur in your body. Generally physicians today seem better informed and more capable of recognizing GPA earlier which results in a much better prognosis and quicker treatment. But you will probably still encounter many physicians and healthcare personnel that are not well informed and it behooves you to become more knowledgeable about the disease for your own self protection. I have had some poor physicians recommend treatments that would have been very dangerous for me and some very good ones that ask me what do you think would be most appropriate course of action now. After a new years of managing GPA you will become an expert on your body and often generally recognize what is happening and what treatment or management is necessary.
    Last edited by drz; 07-29-2020 at 06:13 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Recently diagnosed with GPA

    Welcome to the family, Mandy.

    6-8 weeks since the rtx might not be enough to get its full treatment effectivity. You might feel better after 3 months, even your hearing might get better. Also, for me, only after 2 rounds of rtx, 6 months between and 9 months since the first - the wg activity calmed down.

    I also tag @mishb who is from Australia and might be able to help.... also because I miss her smiles here lately...
    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: Recently diagnosed with GPA

    Welcome, Mandy. Youíve come to the right place. To answer drzís question, Iím one who did know about WG/GPA before my diagnoses. But I didnít quite think I had it. Like you, a big bilateral ear infection was the start of any definitive symptoms. That was followed by 2.5 years of recurring sinus infections, and since I did have allergies, it was all attributed to that. The delay gave me lots of time to scour the web for what could really be going on. When it went into my lungs, I got the diagnosis and was pretty surprised that it really was that weird name I had read online. I even found this forum before the dx was official, and by the time I joined, I already had a lot of background. I would have been lost and alone without this place, and it may have saved my sanity. Itís now been a bit over 9 years that Iíve been here, and though some members have moved on, new ones arrive, and it has always been a great and supportive group.

    Back to the ear infections, I did lose my hearing and only partially got it back. I wear one hearing aid, and the other ear hears nothing, due to a later outer ear infection that caused erosion of the ear drum and the little bones behind it. WG/GPA is good at eroding bone and tissue due to massive, long lasting inflammation that cuts off the supply of oxygen and causes tissue death. For the same reason, I have a saddle nose, which happened right at diagnosis. Without the delayed dx, I would have been treated earlier and these things might have been avoided. For you, there is likely a greater chance your hearing will recover and youíll avoid the saddle nose. I hope so. And I hope you will stick with us and keep us informed on how itís going. Each case is a little different, and we donít seem to get tired of hearing about new ones and putting in our 2 cents worth. Best wishes to you on the road to recovery and remission.
    Anne, dx'ed April 2011

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    Default Re: Recently diagnosed with GPA

    Hi Mandy and welcome. You have found a great place to start learning and asking questions
    @drz, I actually heard about WG, before I was diagnosed because I was looking on the web for anti inflammatory diets, and I came across a post from this forum. People like Jack and Sangye pulled me in, and I found myself reading their stories well before I joined.
    I remember saying, thank goodness my GP thinks that I only have Rheumatoid Arthritis and not this crazy disease. I'm so glad that I don't have it.

    Then after about 2 weeks of reading I remember saying reading out parts to my family and saying, I think this is what I have.


    Mandy, I live in the currently crazy part of Oz, called Melbourne Gosh Covid-19 sounds just like WG

    If you are on facebook, we also have a Group on there for people from Australia or New Zealand Only (Due to our differenting government health and also medications)

    The link is below.

    https://www.facebook.com/groups/516643745050360
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Default Re: Recently diagnosed with GPA

    Quote Originally Posted by Alysia View Post

    I also tag @mishb who is from Australia and might be able to help.... also because I miss her smiles here lately...
    I'm still here lovely lady, just more of a reader at the moment.
    It's a very busy time of the year for me, work wise.

    Here is a happy dance, just because in this crazy time, we need something

    As always,
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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