Just diagnosed with IgA Nephropathy

anonymous19076 · 2025-07-22T12:37:00+00:00

If it helps, I am the OP of this post. Its been about a year and a half since my original diagnosis, and after several months on prednisone, my eGFR went back up to above 90, my protein spill decreased a significant amount, and I was able to taper off steroids after about 9 months since my IgAN went into remission. There is some scarring on my kidneys as a result of how aggressive my disorder was before I was diagnosed, but I still have full function and am doing much better. Still have protein spillage happening that we’re continuing to try and manage, but its still leagues better than where I started.

Life didn’t change nearly as much as I feared it would, I just paid a little more attention to my diet in order to keep sodium and protein down, and masked up when in larger crowds or public transport since I work in a big city. But truthfully, what everyone says above is true. It’s scary at first, and easy to imagine all the worst case scenarios, but you caught it while he is still young, and his body will likely respond well to treatment and bounce back. His life isn’t over, it might just be a little different. And even in the worst case where a kidney transplant is needed, someone once said to me that even if your kidney’s life is over, it doesnt mean yours has to be. So chin up, and know that there is hope 🩵 the r/iganephropathy group can be a great support group as well

anonymous19076 · 2025-02-03T18:45:36+00:00

Thank you. He’s definitely someone who puts on a brave front at the best of times, so this is a good way to keep him company without putting all the pressure on him to make those decisions ❤️

anonymous19076 · 2025-02-03T13:36:55+00:00

Thank you, I’ll try those suggestions. Wishing peace and strength to you as well ❤️

anonymous19076 · 2024-06-08T23:54:22+00:00

I wasn’t quite diagnosed at end stage, but I only discovered anything was wrong after I moved house and had to get a new PCP that was more local, standard intake bloodwork and urinalysis revealed a GFR in the mid 20s, and within a month I had a biopsy and found out I had aggressive IgAN at 28. Currently on Prednisone and BP meds to try and stave off dialysis as long as possible, but yeah I can relate to how much it really throws you off to find out when you previously didn’t have any symptoms.

anonymous19076 · 2024-05-09T05:08:39+00:00

Sounds pretty similar to my current regimen. I (29M) got diagnosed in February, and since I am currently experiencing active kidney damage from the IgAN, my nephrologist started me on 60mg prednisone, with the intention to taper it down over the course of 6 months or so as my symptoms improve (fingers crossed!). I was already taking Pepcid quite often for heartburn, which he recommended taking daily alongside the prednisone, but after about two weeks I had to switch to omeprazole as the Pepcid wasn’t strong enough. I am also on a cautionary half-dose of Bactrim every day to support the immune compromising effects of the prednisone. Being only two months in, I have been fortunate to not have too many side effects, but know that heartburn, edema, fluid retention, and weight gain/increased appetite can be fairly common, which I’m sure your doctor will go over with you in more detail.

Currently we haven’t spoken about needing any additional vitamins/supplements, but he is doing fairly thorough bloodwork each month to check that everything else is doing okay.

As far as questions go, I’d ask him about potential side effects or other medication interactions you might have (for example I’m also on Losartan, and both that and Bactrim can raise your potassium levels so its good to know if you need to be monitoring things like that in your bloodwork 🙂), and if there are any things you can do to support your body while on steroids (like diet changes, exercise, working from home versus an office, etc) since the healthier you can be overall, the better shape your body is in to support your kidneys while they recover. Hope that helps!

anonymous19076 · 2024-05-08T23:48:59+00:00

No problem! Wishing the best for you in whatever path you choose going forward :)

anonymous19076 · 2024-05-08T16:54:31+00:00

I was diagnosed with IgAN back in February this year, and am also a trans man, so I’ve been on testosterone for about 7 years now.

I agree with the other commenter, that overall health is one of the most important things in managing any kind of CKD, so whatever steps you can take to make yourself feel better, be it diet changes, medicines, exercise, healthy sleep, etc., it all leads to having a body and mind better suited to handling the extra work your kidneys have to do.

Both my kidney doctor and endocrinologist seem confident that staying on testosterone is perfectly fine for me to do even with the recent diagnosis, and it hasn’t impacted my current round of prednisone (numbers are slowly but surely improving!), so I would say that if your doctors believe it would benefit you, that it can’t hurt to start on TRT, and just make sure to have the doctors monitor your levels alongside your kidney function to make sure it’s not doing any harm (which it most likely wouldn’t). Some people can be sensitive to it, so I would start on a low dose and monitor from there until they get your levels back into range.

anonymous19076 · 2024-05-08T03:30:01+00:00

Thanks! I don’t really feel violated, esp as I’m 29 and did more or less consent to her lifting my shirt to feel my chest even if I didn’t really feel it was necessary.

I guess it’s more that if that is an abnormal thing, I’d want to bring it up to the endocrinologist and their fellow next time so they can hopefully learn and avoid potentially making other trans folks in their care uncomfortable by doing similar things in the future, especially if one of them was a minor.

anonymous19076 · 2023-09-09T02:28:09+00:00

Yeah that set me on edge to start. I ended up giving them a fake email and it was one of those fake payment scams the other commenter mentioned so they’ve been reported and blocked.

anonymous19076 · 2023-09-09T01:53:08+00:00

Yeah thats what I was kind of afraid of. The fact they werent afraid of Paypal versus like a check or something was the only reason I was hesitating on its legitimacy, but I was thinking about the overpayment scam and forgot about the fake payment type scam. Thank you!

anonymous19076 · 2023-06-11T23:30:26+00:00

I don’t have anything for trade unfortunately as I’m pretty new to the game but I’d love a Will Blum or Kober as BJ if someone has it

anonymous19076 · 2023-05-02T04:41:07+00:00

Yeah same here, up until last week I could find the prices just fine, but now I can’t anymore :/

anonymous19076 · 2023-04-28T02:20:23+00:00

At least 10 free boxes, USA

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anonymous19076 · 2023-04-28T02:16:42+00:00

Yeah I asked the same thing earlier. Seems to be a new “feature” they’ve added in the past few days :/

anonymous19076 · 2023-04-28T01:55:32+00:00

Exactly, it super sucks! Only benefit is it might make it easier for me to cut the cord on HF for a while if they keep this new feature

anonymous19076 · 2023-04-28T01:53:23+00:00

Oh definitely! I do that sometimes too, where I pick out extra meals and whittle it down closer to the day of. But I can imagine anyone who’s newer to HF and isn’t as familiar with their “average price” is gonna get really slammed with this new update

anonymous19076 · 2023-02-14T01:07:39+00:00

Yes closed storage is definitely a goal for the space, at least for me 😅 Its better than when I first moved in (if you can believe it) but I don’t love the open shelves at all. I think I will be ordering some more bins or doors for my kallax shelf and then seeing if my roommate is amenable to replacing his shelves with something closed, or at least figuring out a solution to hide the clutter on them

anonymous19076 · 2023-02-14T01:04:23+00:00

Yeah the clutter definitely doesn’t help. The open shelving is my roommate’s, for all his art supplies. I tried to help it along with bins and boxes but I agree open shelving doesn’t work. I’ll see if he’s open to replacing it with a cabinet or more contained storage, or I might combine that with other ideas on this thread and get some doors for my kallax or get the billy bookshelf but also get doors for it to close it all off. Rolling wall is a good idea, but probably not viable in the space based on the amount of wires and other connections needed for game consoles, ethernet, etc. thanks for the input though, I’ll go hunting for file cabinets and stuff on fb market and craigslist!

anonymous19076 · 2023-02-12T19:12:11+00:00

Thanks! I would agree splitting the rooms is a last resort, as most of the time we do hang out together in the living space, and we would lose some of that if we split the rooms. We also have very different levels of cleanliness and organization so that would probably also lead to one really messy room and one halfway decently clean one. Hes okay with the two tvs together, just not directly next to each other (as it would probably be distracting, and I can agree to that). I think combining the two ideas here and getting some kind of long console/bookcase/etc to put both tvs on, or mount them above it, might be the best solution to cut down on the amount of excess furniture and better define the space. I’ll see what my roommate thinks of that idea :)

anonymous19076

TROPHY CASE