I have had IGAn for about 5 years, and doing ok. I'm a 52 year old healthy male, well beside IGA. The past 2 years I have gotten a little worse. My EGFR just came in at 26. I signed up for a medical study, double blind kind for the Retrophin (Sparcentan) or Irbesartan. I did all of the blood work and 24 hr urine collection twice. I was told I was approved after the first, then at last minute, and final blood/Urine work, they told me I was not a candidate because my EGFR was too low at 26. They said it needed to be at 60 or above, but said it was also good news that it wasn't high for me. Now, I thought the lower the number the worse off I was, and that's what I read all of the web as well. I have contacted my regular Neph Dr and waiting for her to get back to me. She also wants to do another biopsy and get another base line as to where I am from the first one I did about 3 years ago. Stared taking fish pills, but not sure if I'm taking the right kind, or enough either, it's so confusing. Frustrated here in Georgia, and thanks for letting me vent a little.
Wishing you all good health!
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Mulls6
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Not sure what they mean as the eGFR is basically what percentage of kidney function you have left so it can't be good news to have 26% rather than 60%. Someone has got their wires crossed.
Yea, I thought the same thing, and was kind of shocked at their lack of knowledge. This was the research side of the nephrology office. Maybe it’s a good thing it didn’t work out.
So if your eGFR is 26 that means your kidneys are working at 26% of their capacity. You would be in stage 4. The best medication for stage 4 is your DIET!! If you do not know about a renal diet ask your doctor about finding a renal dietitian. My creatinine was 5.7 and with a renal diet I lowered it to 3.4 in just 3 months!
I read that it can fluctuate quite a bit. I was at 60, then, 40, now 26 in a matter of 2 months. I had a feeling diet would have to change drastically, and I guess if I want to stick around much longer, it must be done.
I have IGAN as well. It is autoimmune based. Keeping inflammation down is key. Winter is upon us, so make sure to do what you can to keep yourself from getting sick. I even take hand sanitizer with me for after shaking hands etc, I know it sounds extreme, but every time I've gotten the flu or a cold my function has dropped and it takes awhile for me to build it back up again.
As for diet, the past few years, several studies have been found suggesting plant based diets ( based on fruits veggies and whole grains not vegetarian junk food) is easiest on your kidneys and can slow progression. Just google it and you can find the studies.
Consider using ground flax either instead of or in addition to your fish oil. Ground flax ( not whole), is high in Omega 3 which are naturally anti inflammatory and adds fiber to your diet which is essential.
In the meantime, immediately cut out red meat, fast foods, decrease sodium if you have a high sodium diet, and drink more water.
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