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Thread: Newly diagnosed-happy to be here!

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    Smile Newly diagnosed-happy to be here!

    Hello all! My name is Linda and I am 58 years old, I live in a small suburb south of Kansas City MO. I was diagnosed on June 11 so am very new at this, and although I am sorry we all have to go through this, I am so happy to find a group of people who can relate to what I am going through and now I don't have to suffer through this alone!

    So on to my story....
    In Mar 2018, I went for my regular dr visit, (I get a check up and blood work done every 6 months due to High Blood Pressure and High Cholesterol meds). My liver function has always been fine but kidney function has been low side of normal but stable for 4 years. At this appt on Mar 1, my kidney function had dropped considerably. My Dr had me retest in 2 weeks and it was still too low, so she referred me to a kidney Dr. I saw him for the 1st time on May 2. We talked about family history, and when I mentioned that my mom had schleraderma his ears perked up then he asked me a whole lot more questions. He didn't seem as concerned about my dad having MS but the schleraderma sure caught his attention.

    With blood and protein in my urine and a history of autoimmune, he sent me for blood work and 5 of the 7 tests came back positive for auto immune. My ANCA-MPO was highly elevated. He scheduled a kidney biopsy and follow-up appt. On June 11, he showed me the scans of the inside of my kidney and explained what was going on. He called it Pauci-Immune Crescentic Glomerulonephritis - ANCA-Associated Vasculitis (AKA Wegener's Granulomatosis with Polyangiitis or GPA). He said this is serious but we have caught this very early so I should show great progress after taking medications. He prescribed me with 40mg of prednisone (6-8 weeks) and 100mg Cyclophosphanide (6-9 months) with my 1st followup blood work tomorrow. I sure am hoping to see even a tad bit of improvement, although hubby said don't get your hopes up to high or you'll be disappointed.

    So right now I only have kidney involvement, except in the past I have had a red rash type thing on my legs which is weird but when I showed him photos he said, yes that is all connected. Because my kidney function is impaired he said I have Stage 3 Chronic Kidney Disease

    Thanks again, and I look forward to getting to know you all. Look for me to be asking questions in other threads!

    Linda

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    Default Re: Newly diagnosed-happy to be here!

    Glad you got an early diagnosis and treatment is started. One can lose their kidney function very quickly from GPA if undiagnosed and untreated or poorly treated. Best wishes for quick improvement.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Newly diagnosed-happy to be here!

    Linda, welcome to the greatest place a Weggie can be for advice, general knowledge, and all kinds of help. Many experienced and astute peeps to help with all kinds of questions. Glad you & doc caught it all early enuff...sounds like a good protocol for now. Keep on keepin' on!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Default Re: Newly diagnosed-happy to be here!

    Hi Linda, welcome to the group!


    Sent from my iPhone using Tapatalk

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    Default Re: Newly diagnosed-happy to be here!

    Quote Originally Posted by linda1226 View Post
    Hello all! My name is Linda and I am 58 years old, I live in a small suburb south of Kansas City MO. I was diagnosed on June 11 so am very new at this, and although I am sorry we all have to go through this, I am so happy to find a group of people who can relate to what I am going through and now I don't have to suffer through this alone!

    So on to my story....
    In Mar 2018, I went for my regular dr visit, (I get a check up and blood work done every 6 months due to High Blood Pressure and High Cholesterol meds). My liver function has always been fine but kidney function has been low side of normal but stable for 4 years. At this appt on Mar 1, my kidney function had dropped considerably. My Dr had me retest in 2 weeks and it was still too low, so she referred me to a kidney Dr. I saw him for the 1st time on May 2. We talked about family history, and when I mentioned that my mom had schleraderma his ears perked up then he asked me a whole lot more questions. He didn't seem as concerned about my dad having MS but the schleraderma sure caught his attention.

    With blood and protein in my urine and a history of autoimmune, he sent me for blood work and 5 of the 7 tests came back positive for auto immune. My ANCA-MPO was highly elevated. He scheduled a kidney biopsy and follow-up appt. On June 11, he showed me the scans of the inside of my kidney and explained what was going on. He called it Pauci-Immune Crescentic Glomerulonephritis - ANCA-Associated Vasculitis (AKA Wegener's Granulomatosis with Polyangiitis or GPA). He said this is serious but we have caught this very early so I should show great progress after taking medications. He prescribed me with 40mg of prednisone (6-8 weeks) and 100mg Cyclophosphanide (6-9 months) with my 1st followup blood work tomorrow. I sure am hoping to see even a tad bit of improvement, although hubby said don't get your hopes up to high or you'll be disappointed.

    So right now I only have kidney involvement, except in the past I have had a red rash type thing on my legs which is weird but when I showed him photos he said, yes that is all connected. Because my kidney function is impaired he said I have Stage 3 Chronic Kidney Disease

    Thanks again, and I look forward to getting to know you all. Look for me to be asking questions in other threads!

    Linda
    welcome Linda

    Sent from my WAS-LX1 using Tapatalk

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    Default Re: Newly diagnosed-happy to be here!

    Thank you all for the welcome!

    Just wanted to give you all a brief update of my dr appt today. There is progress!
    Creatinine level slightly lower, eGFR slightly higher, and protein in urine over 40% less! He said that is the most significant change. So basically this means that my kidney function has improved a bit over 3 weeks.

    After one more week he is gonna start the taper of the prednisone, Hallelujah!!!

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    Default Re: Newly diagnosed-happy to be here!

    Quote Originally Posted by linda1226 View Post
    Thank you all for the welcome!

    Just wanted to give you all a brief update of my dr appt today. There is progress!
    Creatinine level slightly lower, eGFR slightly higher, and protein in urine over 40% less! He said that is the most significant change. So basically this means that my kidney function has improved a bit over 3 weeks.

    After one more week he is gonna start the taper of the prednisone, Hallelujah!!!
    dear Linda don't worry, everything will be ok just try to be strong and relaxed and teake your medicine regularly
    i wish you the best

    Sent from my WAS-LX1 using Tapatalk

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    Default Re: Newly diagnosed-happy to be here!

    Welcome to the forum, Linda. Thank you for sharing your story. I am glad they caught the wg beast in time and that the treatment is working good.

    I dont have kidneys involvement (yet?), so I wonder: did you feel anything which indicated that something is wrong with your kidneys or was it only found out in the labs results ?
    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: Newly diagnosed-happy to be here!

    Quote Originally Posted by Alysia View Post
    Welcome to the forum, Linda. Thank you for sharing your story. I am glad they caught the wg beast in time and that the treatment is working good.

    I dont have kidneys involvement (yet?), so I wonder: did you feel anything which indicated that something is wrong with your kidneys or was it only found out in the labs results ?
    I had no symptoms whatsoever. If I hadn't been going for routine blood work, I never would have known. In fact, before I was diagnosed with the high blood pressure and high cholesterol, I didn't even know my kidney function was impaired at all. I only found out all this 'cause I had to go the the ER 4 years ago with what i thought was a heart attack. It was not but bp was really high and in taking meds and controlling the salt in my diet, I have got it under control. So my PSA is get your routine labs done even if you don't think you need to!

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    Default Re: Newly diagnosed-happy to be here!

    Happy to hear your kidney function is getting better.

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