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Do you have IgA nephropathy as well?

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  • Do you have IgA nephropathy as well?

    Hello,

    I am 33 years and I found out I had
    IgA nephropathy stage 4 in 2014 after my pregnancy. My GFR is from 30 in 2014 now it is 26. I have been done so many things including become a vegan but it is still going down. Is there anyone has the same disease with me? I wonder how long it will last.

  • #2
    Are you taking fish oils? Need to take 12 grams a day. I would recommend the Rx fish oils, as they will be more free of contaminants. Has your doc tried steroids?

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    • #3
      I have been diagnosed with IgA neph in Jan 2016. My EGFR is 30. Kidney can last for another 2 to 4 years.

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      • #4
        Hi 48 I'm diagnosed with IgA too since 2010 my GFR is 31. It's been dwindling down kind of slow for me I don't know why.
        I'm taking a blood pressure pill RAMIPRIL 5 mg. also sodium bicarbonate when I feel like it ( they say take it every day but I don't ).
        My cholesterol is high now so I take SIMVASTATIN.
        Everybody is different although we have the same type of CKD.
        I wish I could go vegan but I love chicken... But hey just to warn you some vegan items are loaded with stuff we need to limit like POTASSIUM ... Its loaded so watch out.
        Even though it's vegan you still need to watch PROTIEN LIMIT too!!
        I know it's hard!!! It's all about balance for me.... This is how I balance... I know bananas is high in potassium but I take ONE BITE about once or twice a month cause there might be something I need in it... That's just me🍌 I'm a banana.
        Take care and keep your head up🌺

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        • #5
          I have been on dialysis fo 3 years, Pd then hemo. My GFR is 4, I started dialysis at 6% I have neuropathy and was prescribed gabapentin. It has helped me tremendously! I suggest you ask your Neph about it.

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          • #6
            Hi, I too, have an immune deficiency so I just wanted to be sure you are working with an immunologist/allergist to treat your IgA deficiency. I'm now on an IVIG that doesn't contain IgA so I've stopped having anaphylaxis. Don't know if this applies to you but worth trying. Also we are all different but I cant keep my potassium high enough in spite of large amounts of supplemental K+ so again work with your doctors.

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            • #7
              I too have IGA nephropathy. I found out I had kidney problems at 50, but didn't have to do dialysis for 5 years, I was told I probably had it as a teenager, so it took 30 years to
              get to the dialysis stage. It is a slow process. I have been doing PD for 6 and a half years now. I think IGA stays with you. Just enjoy your life a d try not to worry about dialysis.
              When you do start dialysis you will see how easy PD is. Yes you have to make a few changes but it is so doable. Good luck a d hang in there, you may have several years
              before dialysis.

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              • #8
                I have IgA nephropathy, GFR 31, I'm 36 years old. I had really bad problems as a teenager, my urine was dark red from blood, but then it cleared up until my early 30s when they discovered my GFR was low. I've been told I have a couple more years before dialysis, but it's inevitable. I'm just going to enjoy the time I have left before I need to start dialysis, then go from there.

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                • #9
                  Scientists think that IgA nephropathy is an autoimmune kidney disease, meaning that the disease is due to the body's immune system attacking tissues in the kidney. IgA nephropathy is one of the most common kidney diseases, other than those caused by diabetes or high blood pressure.
                  full information:
                  https://www.niddk.nih.gov/health-information/kidney-disease/iga-nephropathy

                  Regards,
                  Hussey
                  Last edited by RDSara; 02-01-2021, 11:14 AM.

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