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Thread: GPA diagnosis very recently confirmed

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    Default GPA diagnosis very recently confirmed

    Hello everyone. I?m a newly single mom of a 5 yr old boy, 42 yrs old (in a few weeks) and last week received a confirmed GPA diagnosis.
    I have not yet begun treatment as I am looking for natural alternatives to the Rx drugs. I have repeatedly told both my ENT and rheumatologist that I am firmly against taking any steroids. The only recommended options are methotrexate or rituximab.
    Does anyone have any knowledge of natural substitutes?
    I?m a holistic nutritionist, vegetarian (since the age of 15) and workout as often as time permits. I understand the way the body works and the systemically detrimental effects caused by Rx pharmaceuticals.
    Help... please.

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    Default Re: GPA diagnosis very recently confirmed

    Hello Eyes5,

    Welcome to the Forum. In a perfect world, you would think there would be a plethora of natural alternatives to fight our dumb disease. In reality, there’s probably very few (if any) viable natural options out there.

    The steroids and the other drugs are seen as necessary evils. That said, they are the most effective options currently available. Improperly treated (or untreated), this disease can kill. Treatments can be rough, and some may not work well. You may suffer organ damage or you may be in constant pain.

    That said, there are effective treatments. It took me seven years to get off prednisone. It kept me comfortable until I achieved remission some three years after diagnosis. Cytoxan was hard on me, immuran made me sicker, and methotrexate caused excessive fatigue. I’ve been getting annual treatments of rituximab since 2013. Since then, I’ve led a normal life. I’m careful about what I eat (omnivore), I exercise regularly, and I’m able to do the things an average 72-year old guy is expected to do.

    As I see it, you can follow your convictions about natural treatment and maybe be sicker or dead (I’m not optimistic about improvement when so little is known about natural treatment), or you can go through an unknown number of years of conventional medical treatment and have a pretty good chance of returning to health.

    Others on here may disagree with what I said here. I just shared my experiences and opinions. Whichever course you choose, I hope it works for you.
    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: GPA diagnosis very recently confirmed

    I agree with @Pete.

    No natural meds for WG. Too dangerous to count on this thought.

    Untreated, WG can kill and/ or makes one deaf and/ or blind.

    Rtx is a very good medicine.

    And I do like my pred

    Welcome to the forum. What symptoms do you have ?
    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: GPA diagnosis very recently confirmed

    Hi Eyes5,

    I think it's because our immune system that's targeting small vessels in a physiological way, there are no natural substitutes to a medical treatment of this disease. Everyone here would much rather go the natural route if there was one.

    Regarding prednisone, just make sure that your vitamin D levels are optimal and you take medication to prevent osteoporosis. Once you're tapered to a low dose, the ferocious appetite will subside.

    I'm on Mtx with a low-dose maintenance of prednisone and doing ok except for some pain and weakness and a constant fatigue. I personally prefer the once-a-week Mtx pills to any type of chemo infusion.

    Best wishes.

    Ed.
    Last edited by seied; 10-09-2018 at 02:10 AM.

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    Default Re: GPA diagnosis very recently confirmed

    To be very blunt: I am no doctor, but I have been researching studies about GPA / WG over the past 5 years. My active and healthy child was diagnosed, and we were a fitness-focused family living in Southern California, an area with loads of access to alternative treatments. And in five years I simply have not come across any alternative effective treatment to stop WG. Some dietary changes, some Chinese medicine practices, even meditation and counseling - all of these things might minimize symptoms for a time, but the underlying disease is progressive in nature, and if left untreated it is a deadly disease.

    I am so sorry for your diagnosis and I am sure you are in shock. I think you must be in a similar state that many of the parents of kids diagnosed with WG are in at the beginning. A healthy person, and just, wham, out of nowhere. It makes the diagnosis doubly hard to take in. Here you are making all these healthy choices, and for such a long time - it simply doesn't make sense. Our daughter ate salads even as a toddler, and without dressing no less! She was a competitive athlete, and very rarely even had a cold. I know one WG kid who grew up essentially in wilderness - outdoors constantly, eating fresh-caught fish and game - and even with a sturdy, fast-healing child's body he got sick and needed strong medicine. His parents as well as my husband and I would have done anything to keep our kids well without drastic interventions, but assuring survival was more important to us than our principles.

    I agree with what's been said that there are ways to minimize medicinal side effects, some treatment courses are less rough than others, and I know we all agree that not all doctors are created equal in their ability to treat WG. I also agree with Pete - whatever you choose to do, I hope it works. Especially as a single parent to a young child, your life is so very precious.

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    Default Re: GPA diagnosis very recently confirmed

    you are lucky to get your diagnosis before the damage sets in. I was in and out of the ER a few times, spent a few weeks in hosp. then I was intubated for a couple weeks and when i woke up could not lift my head. 1 year of physical therapy work,I walk with a stick and have stage 3 kidney failure, and have pain always. The RTX stopped the progress of the damage. I have a fist full of pills every day and night. I HATE the drugs but they keep me alive. This is my new normal that I had to learn. good luck to you
    little jerry

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    Default Re: GPA diagnosis very recently confirmed

    Welcome. I have to agree with Pete. I don't know of even one person who has been successful with natural treatment. I have had this disease for over 40 years. Health is too fragile and precious to experiment with. This is a great place to find what has worked for people and what has not. Focus on what works even if it is not what you want. I myself had a twenty year drug free remission after 2 years of daily Cytoxan use. It was a great trade.

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    Default Re: GPA diagnosis very recently confirmed

    Welcome to the forum Eyes5,
    I can tell you a little about me. I am a hippie at heart, if I had the time I would be a full time hippie! But alas, I work & have a 4y/o. I make my own soaps, laundry detergent and creams. I have had this disease over half my life and I?m 40! I have tried alternative therapy, I?ve tried alternative therapy and modern medicine together, this includes acupuncture, other Chinese medicines-I?m even getting tested for possible food allergies. I eat organic, non steroid, grass fed blah blah. I try and stay as healthy as possible. This being said-I commend you on your thoughts, however you have a 5 y/o to be there for. You may have good days and bad days that your child will not understand. Meanwhile-there is permanent damage being done to lungs, kidneys, sinuses, ears and sometimes brain. Before you totally disregard conventional medicine-please research. I am also a member of some forums on FB & have heard people stopping all medications. However, they never post follow up. I wish you luck.
    Natty


    Sent from my iPhone using Tapatalk

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