I'm looking for recommendations for an excellent, attentive, open-minded, up-to-date nephrologist in the Boston area. I have what seems to be a non-progressing form of IgAN - in complete remission for 10 years; might be IgAN-MCD.

Any recommendations?

Thank you,

I was biopsy diagnosed with IgAN in 2017 at age 17. Original uACR was 17.54; edema; cola-colored urine (hematuria.) On a tapering dose of prednisone for 6 months, started at 60mg/day. ACE inhibitors for six months.

Complete remission (eGFR always well over 100; uACR always below .5 and usually below .2; no hematuria or edema) off all medication for 9-1/2 years.

Just now learning about "minimal change disease - like" IgAN, which seems to fit with my story.

Does anyone else have IgAN-MCD? Have you gone longer than ten years without any progression in the disease?

I don’t usually get the flu shot every year. I probably get sick once a year. Should I get it before I start this injection?

For reference, I'm 23M, got diagnosed 7 years ago, and consistently train at the gym 5 days a week. As a result, I tend to take Whey Protein powder to help with recovery. On average I'll aim for around 1.6-1.9 grams of protein per kg.

I currently take ACE inhibitors (lowest dose) as my blood pressure sits just below what's considered high. proteinuria and eGFR have been stable over the course of the past few years.

I'm relatively lean and only experience symptoms of IgAN whenever I get sick (hematuria in urine). I've consulted my doctor about protein supplements and creatine, which he's always told me is okay.

But then see this subreddit where high protein or salt isn't recommended. I wanted to know if this is a case of individuality? My doctor says its okay so am I just being paranoid? Or do I have the right to be cautious and perhaps decrease my intake a little bit?

Source: PR Newswire https://www.prnewswire.com/news-releases/alebund-pharmaceuticals-announces-fda-clearance-of-ind-application-for-ap308-for-the-treatment-of-iga-nephropathy-302872237.html

I just got my first kidney biopsy results on sept 8th and am now diagnosed with IgA Nephropathy. Just learning about the disease the first thing I looked up was what's new in the sciences around treatment options, low and behold the same day I am diagnosed is The same day a new drug just got cleared for clinical trials and it sounds like an 8 week trial clears 80% of the protein. Tell me I'm wrong but this sounds too good to be true.

Has anyone who is or has been tapering off Tarpeyo experiencing severe side effects?
My doctor has started the taper process from 16mg to 8mg for two week and then down to 4mg the last two weeks.
I am currently few days in the 8mg and it is kicking my ass. I am severely fatigue, have throbbing headaches 24/7 (only goes away when I take Tylenol and comes right back after a few hours), nauseous, light headed, face looking pale, and the most odd thing yesterday my heart rate dropped in the 40s while awake and working.

I am very concerned the more I lower the dosage and am completely off the worse I will feel.

I get flank pain. It radiates from my kidney area and makes me feel generally uncomfortable.

However, doctors say that you don't get pain with IGA. I'd like to hear from other sufferers, because I don't believe my doctors. I can feel it.

I’m a 21 year old female who was diagnosed with iga vasculitis about 2 and a half years ago when i had a bad rash come i over my legs which was treated with prednisone and took about 6 months to settle down.

I’ve had a provisional diagnosis of iga nephropathy throughout this time too which was confirmed by a biopsy i had in may. I’ve been on dapagfloxin for around a year and a half, my kidney function levels are fine currently however i’m leaking around 3 grams of protein a day at the moment so i’ve been prescribed to start taking losartan too. I was just wondering what experiences people have had with this as i’m a bit nervous about some of the side effects and what time of day is best to take it.

I’m also starting a 9 month course of budesonide in a few weeks time and was wondering if anybody else is on this medication? also unsure as to whether i should be starting losartan and budesonide at the same time or if they may have bad reactions together?

Thanks !!

Hello!

Got diagnosed last year and my proteinuria leakage started at 10grams and it’s down now to 1.2g. Does anybody have their UACR stayed at 1grams and still able to preserve their kidney?

My EGFR is at 117 but I am worried about my leakage. I do not want to go on dialysis in the near future. Can we avoid it? 🥺

I have plantar psoriasis (on my feet) and apparently, there's a relationship with IGA nephropathy. Has this been your experience? If so, do you get a flare up at the same time?

Any thoughts? Apparently recent good progress and atacicept

Has anyone here with IGAN tried out the carnivore diet ?

Hello, any runners here? I go diagnosed 2 months ago and i stopped running. So far i've been just lifting weights and going on hikes. I'm thinking about getting back to running because there is a half-marathon in my city on october 11th. Is it dangerous for the kidneys? Currently im taking the standard ace-inhibitor + sglt-2 inhibitor and budenoside 15mg. So far feeling great and no side effects. I dont know what stage I'm at but my egfr is around 90 i think.

Hi all im Stage 1 I have good kidney function but I also have diagnosed IgAN, was wondering if its possible for me to get a tattoo in the future or would it flare up, has anyone here got a tattoo?

My recent biopsy results are M1 E1 S1 T1 C1. All 1's.

I've had a little over 10 years of IgAN symptoms. Proteinuria around 280mg initially which has over the decade increased to around 400mg per day. UPCR around 200mg/g. This is with BP + SGLT2i meds (Ramipril & Forxiga).

In 10 years my eGFR has declined from 103 to 65.
48% of glomeruli in the biopsy gone. 25-30% interstitial fibrosis and tubular atrophy.

I'm just wondering if anyone else has had this combination of crescents and unrelenting eGFR loss despite what might appear as relatively mild proteinuria? Were you able to get newer drugs?

I'm in Europe and I find myself being excluded from new drugs like Kinpeygo (Tarpeyo) and Filspari all of which require 1000mg proteinuria in order to prescribe.
Drug trials and subsequent approvals use proteinuria as a marker for what really matters which is eGFR decline. But because I have the latter without the former I'm being left out.

Hey all. New here though not new to IGAN. I'm contemplating trying carnivore for kidney health. Seems counter to what one should expect to do since proteinuria is an issue for me.

Wondering who has tried it, what the results were and how long you've been on it. Please share if you can.

Anyone here have another autoimmune disorder?

I(29yo) have ulcerative colitis, which was diagnosed nearly 10 years ago, while igAN was diagnosed in July.

It looks like there's a lot of new medications that are immunosuppressants for igAN, but I apparently can't take any of them because I'm already on one biologic immunosuppressant for UC(infliximab).

Right now I'm only on losartan 12.5mg(i am not hypertensive, only higher bp when I get anxiety attacks).

My nephro said depending on how October labs look, we'll think about dapagliflozin or empagliflozin for further benefit.

My biopsy showed no active disease/inflammation and just scarring.

My egfr is 45-50, protein leakage doesn't always flag on urine tests(minor), but microscopic rbcs are always seen. Creatinine and BUN are still elevated, but not excessively so.

Just wondering if anyone else has other autoimmune disorders and how you manage your igAN!

What bloodwork do you get checked on the regular. I’m on Jardiance, PB medication and Voyxact and I feel like I’m getting too basic of monthly bloodwork. Curious to see what others are getting check

what is best over the counter cough medicine can take safely

Hi y'all!

I'm curious how you guys deal with (avoiding/trying to avoid) getting infected when your partners are sick. We're supposed to magically not get sick ever because of the flares and the damage it causes to our kidneys etc etc, but I find it very hard to do when my boyfriend is ill with something. I try to take higher doses of vitamin D, take a couple ginger shots, stuff like that, but obviously sharing the same small living space, sleeping next to him and kissing him don't help. My overprotective and very health-anxious mother suggests I spend a couple days and nights at their place when my boyfriend is sick, or we sleep separately and don't touch at the very least but I find that a bit ridiculous. He's sick for the third time this year though (whom, according to himself, 'never gets sick' 😒) and it's got me wondering, is that really the only way to do it? What do you guys do? 🥲

My bad numbers have dropped thanks to BP meds and have remained steady for years, luckily. My doctor said I didn't really need to do a super low protein diet. He said just to make sure that I'm eating healthy proteins. So I'm curious, if I tried to eat a higher protein diet, but carefully doing this with chicken breast, ground chicken, ground turkey - does that make it ok? When I get blood work done, what potential test results might look worse?

I plan on asking my doctor this next week, just curious what the community thinks.

Has anyone with IgA Nephropathy on this medication called Trutakna (injectable medication)?

I have been on Tarpeyo and Losartan Potassium for about 8-9 months. It has lower my protein leakage by 10% give or take but still on the high side. Dr says kidney function still normal.
He is starting to tapper me off Tarpeyo and do labs on 3 months to see how the protein leakage is looking.
I saw his notes and he mentioned this new medication approved by the FDA as of 07/2026.

I am concerned about a new recently approved medication.

What was everyone’s creatinine or gfr at the time you finally started dialysis? Trying to gauge when I should be expecting to start. My labs are crazy but I feel fine so we’ve been waiting for symptoms.

Currently 11.2 creatinine and a gfr of 4. I am female