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Iga nephrapathy

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  • Iga nephrapathy

    Hello- anyone else out there with this diagnosis? Im a 31 year old female, was diagnosed about 3 years ago. Still in stage one, but relapsed from Prednisone twice and may start a trial of Cellcept soon to see if it will help. My doctor is sure that I will need a transplant someday. How do you cope and live everyday without being scared?

  • #2
    If you watch your diet what you drink and take only truly necessary medications you might be able to hold your GFR for quite a while. I'm not sure what you meant when you said you relapsed with predisone...im assuming you mean after taking predisone your GFR wrnt down?? Your GFR Will flucate. When i was diagnosed at 47 a year ago my GFR was at 15. I was five points from needing dialysis. With a very strict kidney friendly diet and lots of water I was actually able to bring my GFR up to 40! Its has dropped since to a 32 but still holding above 15 with diet. Don't worry yourself too much because stage one can stay like that for awhile. Be mindful of everything you put into your body and (depending on the reason your kidneys are down) you can stay in stage one for a while. After a bit you begin to accept you will eventually need a transplant and dialysis. But you will realize YOU have more control than you think. What is your GFR now?? Remember you are NOT alone. You have lots of friends here. Reach out and peole will reach back. Dont worry yourself too much. I wish you the best and hope this helps some.

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    • #3
      Thanks for the reply- it's hard not feeling alone by grateful that I can find a forum with people in similar situations. What kind of kidney disease do you have? Mine is IGa Nephrapathy. I relapsed meaning I was able to get my urine protein down from 9 grams a day to less than one, but then went back up to 2.5/3 grams a day. Second relapse I was pregnant and my protein went up to 14 grams! Postpartum was able to get it back down again but it went back up to 3 grams a day now.

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      • #4
        I was diagnosed in January of 2003 with Iga at the age of 40 yrs. I was immediately put on dialasis and had a transplant in October of 2004. The new kidney begian to fail about 6 months ago. I too am on the prednisone treatment and I try to watch what I eat in limiting proteins. It is just frustrating that there is no real tratment other than prednisone and a high fish oil dose daily seems to help the filters not to plug off. Hnag in there, I have run the gammot with this thing and it is doable, just frustrating that it happens for no fault of ours. Don't lett it get you down, it can be treated, after transplant the fishoil helps prolong the life of the new kidney so the filters stay functioning properly. I am a believer in the fish oil, after transplant I had a rejection episode and the Dr. told me the kidney would only last 5 years, it lasted 13 and I am certain the fish oil was a big benefit. Fish oil was recommended by my first nephrologist. Keep your blood pressure under control as well.

        Good Luck, you can do it.

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        • #5
          25 yo female with IGA nephropathy here. 32 weeks into my second pregnancy and it caused a big flare up. With my first it flared up but not this bad. Hoping it will settle after delivery. We will see.

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