Anybody on here have kidney/auto immune diseases like HSP or IGA Nephropathy?

[HeIsAVeryBadBoy]

Just that really. I am affected by one or both of these (haven't had biopsy yet because the renal facility is closed due to COVID-19. But symptoms of both and they seem in lots of ways to be one and the same thing
). I've had this illness for about two years and a relapse put me in hospital about a month ago, I'm now back home but have another relapse starting (big rash down my leg).

Both things are so rare that outside of my consultant, I can't really talk to anybody about it. I figured there might be others in my position so perhaps we could congregate here?

One thing that really bothers me is the lack of info online. All the HSP info and research is weighted towards childhood HSP, which isn't as severe and doesn't have the same prognosis/implications. I don't know of one single other adult with it.

So yeah! Anybody out there?

RE: henoch's purpura, it is hereditary, I had it and now my son has IGA. My great uncle also had henoch's purpura.

@Guineapigbridge

Theres facebook groups of IGAN
Look up fb groups like "Children with IGAN"

You wont need stitches for a kidney biopsy

The mark / hole isn't much bigger than a pin prick

@DontWantToAdult

no she didn't actually say that, I think I made that up in my head

I assumed it must involve stitches because she was saying that they cut you open and take a scrape of the kidneys and that it can be really bloody/dangerous (I suppose she's obligated to tell me about the worst case scenarios). In my head, I've probably imagined this looking much worse than it is?

Everything you've said has made me feel so much better. I googled it after I got home from that appointment with her and that really didn't help. Some of the descriptions are vile and I don't have a strong stomach.

The needle is tiny and it goes in and takes the tiniest bit of kidney, i asked to see it

And then you just lay for 4-6 hours

You wont need stitches and they most certainly dont "cut" you open.

You have been making it worse in your head

I didnt even bleed through the plaster.

It hurt afew days later, but like a very bad bruise.
You must take it easy, depending what you do for work.

Worse case is that you have a little bleed, thats why they check your blood pressure and make you lay down.
A bleed isnt very common, just a risk, like with everything.

Have you read the side effects of taking paracetamol?
99% of people wont have any..
They just have to tell you

@SandysMam Dialysis was tough (for us all) because there was a few complications, the kidney was quite 'sleepy' after transplant and took a while to start working, but this is quite common although no one told us. He is fine now, really well compared to the last few years, the only this that is stopping him is shielding/lockdown.

@HeIsAVeryBadBoy This is a rough timescale

2002 - high blood pressure diagnosed by GP
2003 - referred to hospital, monitored for 6 months the biopsy (he was admitted for 48hrs and had to lay flat for 24hrs - looks like this has changed though). eGFR was around 60.
2003-2016 - monitored at the renal unit with annual or 6 monthly appointments with adjustments to BP medication with a slow and steady decline until eGFR was 25.
2016 - in July DH collapsed at work, he had high potassium and low heart rate (was 18bpm in ambulance). He was then stable until end Sept then full on planning for transplant list and dialysis. Op for dialysis catheter in December.
2017 - eGFR was around fluctuating between 6 and 10 so he started dialysis a couple of weeks earlier than planned and went on transplant list in the same week at the end of January.
2019 - transplant in December

DH was fine after the biopsy, we went shopping when he was discharged from hospital. He had the bruised feeling for a couple of days I think.

Thanks @Tabymac it is always good to hear people who have been through it all. It is a strange illness because not many people understand kidney problems and on the outside, you actually look fine!
I wish your husband all the best with his new kidney, enjoy life!

Obviously enjoy life as much as this bastard virus and the restrictions will allow!!

@SandysMam

on the outside, you actually look fine! Yup! I look healthy enough - that's most people's response to my news actually. But today I feel like I'm struggling to stay awake and there's a big part of my brain that thinks that I should be in hospital.

Actually, that's another question I have for people - do you ever feel like things are bad enough to go to A&E? If I didn't know about my kidneys, and I got the rashes that are on my legs now, I'm pretty sure 111 would send me straight to hospital (non-blanching rashes etc) but I'm just carrying on. Is that the right thing to do?

@DontWantToAdult

That's amazing information, thank you :) My fear level has reduced by about a million percent! I must've just picked up on the worst things that she said. The way you describe it, it sounds on par with getting bloods done and I can so cope with that!

@Tabymac Thank you for the timeline. I know everyone is different but it helps to see how it's played out for somebody else.

I'm glad he's okay since the transplant, that must've been really scary for you both. I really hope he goes through the rest of his life without any more kidney issues. Does his life look relatively normal now that he's had a transplant? If so, that must be such a relief after years of dialysis.

With regards to you saying that you just feel like you need to go to A&E.

I get the feeling and have gone many times, theve only let me home once

This is going to sound weird but i call it
" Kidney ill "

I have different medical problems where i feel ill afew times a week, but when my kidneys are playing up, it feels different.

When i tell my partner i feel ill, He asks "kidney ill" and i know the feeling when i need to go to the hospital.

When i arrive at A&E, i tell the nurse at the front that i feel ill and she looks at me as if to say, 'one of those who come with a scraped kneww' or she tries to send me to the hospital gp or tells me how well i look....
But i just say, 'just look at my medical records, i will show you the colour of my pee and do some bloods, 'Im not 'one of those people'
Because as you said - You look well ...

I imagine you also will get use to the feeling of when you really need to see someone -

When did you last have bloods?
Have you got a smaller A&E closer to you?
Can you talk to the GP and ask for urgent blood tests?

If you feel similar to last time, please just go to the hospital

Hi OP, not exactly the same, but dc1 was diagnosed with PGA nine years ago in their mid teens (very unusual).
The only way to get a true picture of your kidney function is a biopsy. DC's was 50% at biopsy, expected to achieve 75% max with recovery. You will need to take it easy after the biopsy for a few days.
Dc was put on immunosuppressants and steroids (steroids for eight months). They were still antibody positive until two and a half years later (and two different immunosuppressants tried).
What did the trick for them was rituximab. I don't know if the is what you may be offered.
They've been in remission since. Kidneys doing ok, immune system rather crap but manageable.
If PGA is completely irrelevant apologies, but I thought the story would help you get a picture of what may happen.
P.S. Dc couldn't pee on a bedpan either - and be warned there will be a lot of blood for the first few wees!

I didnt get any blood in my urine after....

If you do get alot OP, best to check with the hospital, they will give you a number to ring upon discharge i imagine...

@mineofuselessinformation

Glad your child is ok now

@HeIsAVeryBadBoy

How are you today?

@HeIsAVeryBadBoy

Hope you're ok

Hi, I was diagnosed with kidney disease two years ago. My only real symptoms were tiredness and edema in my legs. I was 41. My kidney disease is Minimal Change Disease and Nephrotic Syndrome. The kidney experts think it’s auto immune.

I know exactly where you are coming from feeling very isolated as my illness is also very rare and more prevalent in children.

Because my GP took so long to refer me to the hospital, I ended up with extensive DVTs from my right leg right up to vena cava caused by the nephrotic syndrome. I spent almost a month in hospital.

My life has been turned upside down since diagnosis. I have since relapse and spent another month on the renal ward. I’ve been in high dose steroids for two years and I’m now steroid dependant. I’ve had five doses of chemotherapy as well as anti organ rejection meds called tacromilus and I’m now on rituxumab. It hasn’t been easy but I am hopeful the new treatment is working.

On a positive note, my eGFR, although like a rollercoaster, is stable at the moment and I am not on dialysis. I am still able to work, albeit part time. I am permanently exhausted but my friends, family and colleagues have been so amazing. It’s really taught me what’s important to me and not to stress over the small stuff.

I hope you get to have your biopsy soon. They really are fine and I’m the biggest wimp ever xx

I meant to say that I had my biopsy at Cardiff. It honestly was painless. The hardest thing is lying flat on your back for 6 hours afterwards. You feel a dull ache afterwards but a few paracetamol sorted me out. I was already an inpatient when I had my biopsy but the lady in the bed next to me was kept in for 24hrs after her biopsy so maybe they will do that at Swansea too? X

@DontWantToAdult

Thank you so much for checking in with me. Sorry for not replying earlier, I've had a really tough weekend.

I'm picking up now but I've been feeling really weak and useless, and I'm also starting to notice a pattern of really dark moods when I'm feeling physically under the weather. I don't know whether it's caused by the disease, physically, or whether I'm just getting really fed up with things. It's pretty horrendous - I'm a glass half full person 99% of the time so I really hate feeling this way. I keep bursting into tears over nothing and I never, ever, ever cry. So I guess this is another lovely side effect to add to the list!

The good news is that my HSP rashes started fading over the weekend and I took my dog out for a couple of walks, which I haven't done for a couple of weeks because I've felt too tired. So that's got to show that things are looking up.

Hopefully, things will stay level-ish my next hospital appointment next month.

How have things been with you @DontWantToAdult? I'm going to steal your phrase 'kidney ill' - it makes so much sense to me.

@CherryDrop7

Thanks for the reassurance re: the biopsy. I'm honestly just so relieved hearing all of your stories, it has made the world of difference to my thought process about it.

Your experience sounds really familiar to me but luckily, I've escaped prolonged hospital stays so far. That must've been really very tough for you. How are you finding the steroids? Chemotherapy sounds incredibly intense - I didn't know that they treated these things with chemo. Were your symptoms any better after that course of treatment? I hope you've had a lot of love and support around you throughout, it sounds tremendously difficult.

I'm glad I started this thread so that we have each other to talk to about these things. It is isolating. The only person I talk about it to is my partner, but he runs out of responses because (obviously) he has no answers or solutions. Sometimes, it's nice just to talk to people who've been in/are in the same situation.

Glad you are ok and managed to walk the dogs.

Take care