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Autoimmune disease

Iga nephropathy????

3 replies

MagicalCreatures · 20/08/2021 22:16

Is there anyone on here that has this please give me a little bit of Information.
I'm not really sure what it is exactly I want to know. Maybe just a selection of everything.

I'm 34. Female.

18 months ago I had a nasty cold and the day after it started, I had back pain in the early evening followed by a general feeling of fatigue. I went to bed and woke at midnight being violently sick. I wasn't sick anymore after that and didn't have a stomach bug but the next morning I noticed my urine was very dark. A couple of days later I was up at the out of hours doctors giving in a urine sample that was black. I was given antibiotics.
The doctor referred me to urology but before I got seen by them, 7 weeks later after getting another cold, the exact same thing happened again.

I was seen by urology who found nothing wrong with my bladder and they did an ultrasound on my kidneys that showed nothing. I was discharged. Possibly a kidney infection that didn't clear up properly the first time round they said. But no infection was ever found from the samples they sent off of my urine.

Anyway, cos of covid and lockdown, I've not had a virus since. Until 2 months ago.
The exact same thing happened again. Minus the being sick.
No infection found in my urine sample that was yet again black with blood. It clears up by itself but this time I've noticed it hasn't fully cleared. There seems to be visible blood in my urine all the time.

I then catch my 2 year olds diarrhoea bug and the same thing happens again. My urine turns black.
This time however, I now have an almost constant niggling in my back.

The doctor checked my urine for protein on the third occasion a couple of months ago. This was about 2 weeks after the cold had gone cos they lost the first sample I dropped off that was very dark still and very foamy.
A level of 5 (god knows what) was found in the second sample I dropped off. She'd referred me to renal who have said that they want me to be seen by urology again first cos the level of protein wasn't significantly high.

I was the one who mentioned iga nephropathy to the doctor. She agreed it needed to be looked into.

Can anyone offer me some guidance or advice x

OP posts:
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ionlywantedamagnum · 17/10/2021 22:59

Hi, I know it's been a while but I just spotted your post and wanted to reach out. How are you doing? Are you any closer to a diagnosis or understanding what's happening with your kidneys? I was diagnosed with membranous nephropathy at 23, over 20 years ago now. It's slightly different to IG nephropathy but I think it's similar enough to be relevant! I was diagnosed after having swollen ankles in and off for about a year and protein in my urine. The diagnosis was only confirmed with a kidney biopsy, but I'm not sure whether things have changed over the years.

I was treated actively for about 3 years, including steroids and immunosuppressants but eventually went into remission and have been fine ever since. I was recently referred back to the clinic because of high blood pressure but they don't think I'm relapsing. It was a really scary time for me, particularly being so young and no one really being able to give a prognosis. As I understand it MN many affects older men so it was unusual.

Anyway, as I said, I just wanted to reach out. I hope you've managed to get a bit closer to understanding your diagnosis x

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Speedyhare22 · 20/10/2021 00:06


Thanks so much for taking the time to post.
Its very kind of you to share your experience and diagnosis. I can imagine how frightening that must have been.
It is really scaring me that something is wrong.

So my update is, the kidney specialist said that unless I develop high blood pressure or very high amounts of protein are found in my urine, he would request another blood and urine sample in 3 months time.
He referred me to urology but as you can imagine, due to the backlog, I am yet to hear anything from them at all.

3 months have passed and I was called in on Monday (yesterday) to give another blood and urine sample. Yet to hear the results.
They said that if my kidney function had deteriorated at all, then the specialist would see me but if not, then I've got to wait for urology to contact me. God knows how long that will be.

My urine still has visible blood in it. Almost every time.
Another doctor that was very kind did say that if I get another Infection or virus that causes another episode of the cola coloured urine etc then I can take a sample straight in and it might push it through quicker, but I'm yet to catch another bug. Typical.

So here I am. I'll update on my most recent blood amd urine results when I get them.

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Sarahlouu · 27/02/2022 22:17

Hi! I hope you are feeling ok? I have this - doesn’t seem to be very common so your post flagged. It was recently discovered after the birth of my third child after my bp failed to regulate itself even with medication. I have trace protein and blood In my urine and have done for years now but didn’t get flagged till the bp issue. I’m under a neph now and seeing him every 3 months. Not really sure what all this means but my neph tells me I have a mild case pray it stays that way. Anyway, you aren’t alone and it is perfectly manageable I have been told with prescription medication and diet- low sodium and tons of water. Sending positive and healthy vibes. x

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