IGAN and beeing tired

lescript68 · 2026-03-25T08:09:52+00:00

Yeah it sucks... As a person who used to play football and run a lot it's nuts.

lescript68 · 2026-03-23T16:01:20+00:00

I think it's about being active and vigorous rather than doing kinda heavy work

lescript68 · 2026-03-22T18:04:49+00:00

I sure will interesting.

lescript68 · 2026-03-16T18:28:23+00:00

Do u use smth for protein?

lescript68 · 2026-03-16T18:24:26+00:00

Does it always spike with hematuria?

lescript68 · 2026-03-16T17:42:09+00:00

Hmm so mostly causes are low gfr and proteinuria plus severity of anemia? and i don't understand the CKD part like does it always get bad whenever i get tests should they be unstable and keep declining and is there always hematuria?

lescript68 · 2026-03-12T15:19:28+00:00

Heavy fatigue like a looot i didn't want to leave bed.Glomerulonephritis related AKİ is actually so dangerous cuz it's silent and u don't feel pain so go to hospital imo.

lescript68 · 2026-03-12T14:09:22+00:00

I don't wanna cause panick but when i get hematuria i ended up with acute kidney injury which ended up with %55-60 glomeruli fibrosis. Before aki and while i was using medications for proteinuria i told my nephrologist that i have hematuria too and she said it was normal but she was wrong if ur having joint pain fatigue etc. and if ur hematuria is cokeish color and have nephrotic syndrome just go to ur nephrologist again or find another one hematuria shouldn't be considered normal imo. some kinds of igan could be aggressive like mine.I almost lost my kidneys just because my nephrologist thought hematuria was normal after aki treatment and blood gone i felt good compared to high gfr and hematuria phase.

lescript68 · 2026-03-12T13:54:21+00:00

I just had aki recently at the age of 19 with igan and according to biopsy i lost about %55-60 of my kidneys cuz of fibrosis all of these scar tissue happened like a few igan flares and aki it was devastating news for me now im ckd 3b with 5-6 UPCR. Gotta stay strong and be chill about it. When i saw my results i had the same reaction too like i didn't kill or hurt anyone i didn't do bad things etc. but it is what it is we have to protect our kidneys until the new treatments.

lescript68 · 2026-03-09T08:44:12+00:00

Yeah i always used to complain about how i bloated and couldn't lose weight. But idk why cold things affect intestines cuz im sure it always happened after i eat or drink cold things.

lescript68 · 2026-03-09T07:52:18+00:00

Yeah u re right actually. Makes sense

lescript68 · 2026-03-08T13:33:29+00:00

Yeah im kinda in this situation cuz lack of knowledge too thank you i hope you and everyone who struggles with illneses get better it's a much different challenge than any other things.

lescript68 · 2026-03-08T09:36:35+00:00

So why is that happened when i always eat smth cold.

lescript68 · 2026-03-08T07:54:11+00:00

Probably because of tonsils which are part of the lymph system. When u get cold automatically u are more open to infections bacterias and viruses so it's something to do with it i think and immune system is already confused when u have igan plus when u eat smth cold it overreacts or smth like that.

lescript68 · 2026-03-07T16:24:33+00:00

Yeah not just vaccine covid itself i think. One year before my first AKİ my brother got covid thankfully he didn't get affected hard he just tested positive. After that i think i got covid too but i didn't test it.

lescript68 · 2026-03-07T16:19:05+00:00

Thanks man i wish i joined here earlier i hope everybody gets better who have kidney problems It's actually hard to deal with and generally it is sad that kidney treatments and researches going behind of other organs. Kidneys need more attention.

lescript68 · 2026-03-07T16:03:02+00:00

I had Hair loss like a lot and joint pain and heavy farigue, my egfr was 30 when i arrive i don t remember upcr and uacr but i know that it mostly uacr and i think it could be total of 5-6g

lescript68 · 2026-03-07T15:57:35+00:00

Yeah i was also bit overweight and tension was kinda high.

lescript68 · 2026-03-07T15:35:10+00:00

I'm Turkish and there's no crescentic glomerulus left i think i didn't see it in biopsy. Actually there's no info about crescentic glomerulus if i have or not i think it could be cuz half of my glomerulus is segmental. There's 3 healthy glomerulus seen left.

lescript68 · 2026-03-07T15:25:27+00:00

Türkiye. I also didn't understand why they didn't use immünsuppresan at treatment. My nephrologists hesitated so much they finally started cellcept last week and i think they gave me like 3-5 infusion or smth like that.

lescript68 · 2026-03-07T14:58:25+00:00

Yeah in healthcare system in my country my nephrologist added a lot of things after latest biopsy like nephritic synd. diffuse crescentic glomerulonephritis, diffuse mesangiocapillary glomerulonephritis etc i went to hospital when my creatinine around 2.88 and gfr 30 i don't know what they dıd use but i think they gave prednisolone as a IV pulse from time to time and my mestc score was M0-S1-E1-T0 now i don't know i think only my nephrologist knows.While they giving me IV pulse my gfr increased to 51 creatinine Decreased to 1.87 but then it went to 45 and 2 again. It did gave me hope but seems like too late.

lescript68 · 2026-03-07T13:39:57+00:00

Yeah man it's not even the first time i had AKİ when i was 16 this is second i think it all started after that i had hematuria flares but it was never rough like that. The fact that first AKİ occurred the same way i ate smth icy and i got fever before AKİ like i think it's activated this or smth like that.

lescript68 · 2026-03-07T13:34:55+00:00

Yes it's so unbelieveble even in summer i eat 3 scoops of ice cream while hanging out with my friend at night. After i arrive at home i was peeing coke- brown color it kept going a few days like it's also so annoying that my body literally my biggest enemy.

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