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  1. #1
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    Hi everyone, thanks for accepting me, i am new to this GPA, was admitted to hospital in April 2016, where they picked up that i have Tracheal Stenosis, as well as that i have a big cavity in the sinuses.... Did alot of tests, tested positive for C-Anca, they did not yet get it confirmed with a biopsy, bit they started me on Pulmison and Cytoxan, just want to find out, is there anything that i can change in my eating habits that will help? And is there any advice on drs in Gauteng, South Africa.
    Last edited by Marli Hattingh; 06-12-2016 at 07:10 AM. Reason: Corrected spelling��

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    Hi Marli and welcome. Steroids and Cytoxan are standard treatment in most cases. There are lots of differing opinions on diet. If you have kidney involvement which I'm assuming you don't then a renal diet can help. At this point the best I can suggest is just eat healthy and give your body as much good stuff as you can. There are others on here with better diet advice than me though

    For doctors, I'm sure there are several members from South Africa here - hopefully one of them will chime in.
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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    Welcome to the forum Marli.

    Steroids and ctx are the common treatment for wg. Although there is also another treatment which is common, rituximab. It is more expensive so docs usually give it if other treatments couldnt help.

    Eating healthy food is sure important. No sugars or perservatives or junk food. No alcohol.
    Anyway, there is NOT any way to treat wg by any diet. We need the meds. No choice. Sorry.

    We have Rose from South Africa. I didnt see her around already long time so I suggest you to send her pm. This is her profile http://www.wegeners-granulomatosis.c...bers/rose.html

    As for tracheal stenosis there is subforum here for this issue: Tracheal Stenosis

    Good luck and please update us how are you doing.
    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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    P.s. Karin is also from South Africa. Her mother has wg. This is her profile: http://www.wegeners-granulomatosis.c.../kieshara.html
    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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    Hi Marli,

    Great suggestions so far, I would just add that cytoxan can cause bladder issues so be sure to talk to the doctor about ways of protecting the bladder.

    Wegs nearly took me a few times. I had to give up meat, alcohol, cigarettes, crap sugars, pesticide coated food... mostly all in small steps, one day at a time.

    The one thing that had a noticeable difference for me is juicing farm fresh green veggies when my GI is inflamed and making nutrition rich smoothies when GI is doing ok.

    Best wishes to you,
    Tom
    Best wishes,
    Tom
    ----------------------------------
    2 years untreated. Dx w/ biopsy - 2000
    Tx Plan:

    NUTRITION
    RESTORATIVE SLEEP
    RAISE ANABOLISM
    REDUCE ALL INT / EXT STRESSORS

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    Thanks to all of you, it is so special to get feedback, i will follow the advice and I will keep you all up to date, at this stage i am not feeling so great, and it feels like my kidneys are taking a bit of a strain, i am seeing the ENT and Pulminologist again on the 27th of June. Let this day begin, i will be juicing away

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    Quote Originally Posted by Marli Hattingh View Post

    at this stage i am not feeling so great, and it feels like my kidneys are taking a bit of a strain, i am seeing the ENT and Pulminologist again on the 27th of June.
    How much is your creatinine ? We need to keep an eye on the kidneys. I hope yours are not involved.
    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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    Welcome, Marli. It sounds like you are taking a common sense approach. Every case is a little different. I, too, have the big cavity inside my nasal/sinus area, where the bony structures have been eroded by the disease. MY ENT says the upside to that is I'll not be bothered by sinus infections the rest of my life, as there are few places for mucus to collect and fester. I still have some collecting around the top of my nose, so must do the daily nasal saline rinses. Cytoxan can clear things up pretty fast, and it is best to be on it for not more than a few months, then they may switch to something milder like methotrexate or azathioprine. While on CTX, be sure to drink LOTS of water every day to keep your bladder flushed out so that the toxins cannot collect there, as there is a risk of bladder cancer later on. If WG is confined to your sinus area so far, that is good, and with early, aggressive treament, it may not appear in your lungs or kidneys. It is unpredictable though, so you are right to minimize the risks with a healthy and stress-free lifestyle, and be ever-vigilant, continue with regular blood testing even if you feel well. The c-Anca is not the most important indicator, as it is not always reliable, but the tests that measure your creatinine (kidneys) and your inflammation levels, as well as things like blood counts for anemia,and your glucose levels, are important to keep tabs on. Keep us posted on how it goes and feel free to ask anything anytime and blow off a little steam if you need to.
    Anne, dx'ed April 2011

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    I love your wise posts, Anne. Always a pleasure to read.
    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. #10
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    Quote Originally Posted by Alysia View Post
    I love your wise posts, Anne. Always a pleasure to read.

    Thanks, Alysia. My wisdom comes from reading this forum and learning from those wiser than I am! After awhile, things sort of sink in.
    Anne, dx'ed April 2011

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