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?

Definitely have a look at groups on facebook.

You wont feel alone.
Alot the groups are world wide, so people in America have very different treatment to us.
But lots of people who live in England post too.

Theres also UK groups as well

I have:
IGAN, FSGS and Nephrotic syndrome.

When ever im in hospital, drs and nurses all seem to know what the conditions are.

My GP surgery also tends to be ok...

My neph consultant is my go to.
We email through "mychart" which is a hospital app and he tends to reply via email the same day.

When ever im in hospital, its flagged up on his system and he will come down to a&e and see me or if his not in then he will come and see me on the ward when his in next, even if im in with something different

Try the Kidney Care UK support group on Facebook, we’re a really supportive community. Also, there’s Young Adult Kidney Group if you’re between 18-30 years old.

The hospital app "mychart" also shows any results, bloods, scans, everything. So its good.

I also have "systomonline" with my doctors, where i can access my blood results that i have had via the gp surgery.
(Have you got wither of these? Past results will be on there)

You will get use to the numbers and checking your results

A simple cold has put me in hospital many times. It does suck.

I'm shielding, have been since March 14th, only left to go to the doctors.

Are you shielding?

On facebook there is also the group

IGA nephropathy support UK

I am shielding but I haven't had an official letter. Long story, but in a nutshell, when this all started,by the time I saw the consultant the rashes had cleared up and there was only a small amount of protein in my urine. So although she was convinced about the diagnosis, she didn't have enough evidence to officially diagnose. When I saw her last month she said I had blood and higher levels of protein in my urine but that she'd be able to make full diagnoses on the back of the scans and biopsy that I'm currently unable to have.

Are most of you shielding?

For those of you using those using MyChart and similar, and for those of you whose doctors seem to know whats what, do you have private health care or is that via the NHS?

I'm in a very under-served and rural part of the country. My doctors are doing their best but I can imagine that they don't have the best resources. My nearest specialist centre (that will undertake my scans and biopsy) is hundreds of miles away for example. Not sure if that's the case generally or just in my part of the UK.

My chart and systomonline are NHS

Im lucky i live only half an hour away from Cambridge , So Addenbrookes which is a big hospital and trauma centre

Had my biopsy done in London though, as thats where i lived at the time
St Georges hospital, Again a big trauma centre hospital

Both with heli pads, where people from far away come too...

Guess iv been lucky in that case.

DH was diagnosed with IGA in his early 30s after a routine check showed his blood pressure was really high. He had a biopsy to confirm and I think his eGFR was around 60. He had a gradual decline in kidney function until he started dialysis 3.5 years ago and had transplant before Christmas.

eGFR is now in the mid to high 70s, the best we’ve ever seen it.

Our hospital uses PatientView to access blood results.

Yes, i think hospitals use different systems.

Maybe ask your hospital and doctors surgery what ones they use

OP you asked if HSP (we’re talking about Henoch schonlein purpura right?) was genetic- both my sister and my dad have had it. Sister when she was a child, dad as an adult. Both after a bug. So I suspect there must be a genetic component. Bit of a coincidence otherwise! All the best

@Tabymac hope i’m not high jacking the OP’s thread but how has it all been for your DH? Has he recovered well?

@HeIsAVeryBadBoy my HSP is definitely stress related. When the rash first appeared my mother was in hospital on deaths door (or so we thought, she’s okay now thank god) so pretty stressful. I’ve had plenty of flare ups but my second big one was when I was going through an horrific time with my ex. Sometimes I would literally come off the phone with him and start itching and could see the rash flaring up. A consultant told me autoimmune illnesses are caused by ‘drugs or bugs’ but I’m certain it was a stress reaction

@Skinnyjeansandaloosetop. No one in my family has had HSP, not to say it’s can’t be a factor for some people but mine was definitely stress.

@SandysMam (and everybody else) please don't worry about hijacking. I sort of hoped that this thread would spark supportive conversations amongst all of us.

@Tabymac, do you mind if I ask how long it was between diagnosis and dialysis?

@Skinnyjeansandaloosetop That's really interesting. I know of nobody in my family that has it but it may have gone unnoticed. Weirdly, both my dad and my paternal grandmother have duplex kidneys (means that they have extra kidneys, as I understand it) so maybe we are a family of dodgy kidneys but in different ways.

@Pineapplemonkey that mirrors my experience. It started during a breakup with an abusive ex, and has reared up lately and it's fair to say covid/finances etc have been stressing me out massively. I'm going to keep a diary of flair ups to see if the pattern continues or if it's just coincidence.

In terms of symptoms, so far the worst thing for me is feeling absolutely wiped out. I'm a really energetic person and I always have a million things on the go. This illness takes that ability away completely. I leaned down to pick the washing basket up before and found myself lying on the floor and going to sleep right there. This level of uselessness only seems to coincide with the rashes, I'm hoping that the frequency of this doesn't increase.

Does everybody else get this? Is there any way to pep yourself up?

@ExhaustedBeyondBelief That is lucky, I'm glad you've had such good treatment in easy-ish reach for you. That has to make things easier to deal with.

I'll have to go to Swansea for my biopsy and its a couple of hours away. I'm a bit (very) concerned about it because I don't think they keep you in for it so I'll likely have to stay in a hotel and that's the last place I'll want to be. I could get my DH to bring me home but then I'll be several hours away from the hospital if something goes wrong following the procedure - please don't tell me horror stories anybody. I'm actually really scared of the biopsy because the doctor was pretty frank with me about it and it sounds horrifying.

Actually, does anybody have any positive stories? I.e. 'I went in, it all went fine and I went home and nothing went wrong'? If not, can someone make up some nice stories please?

I had HSP as a child, not an adult sorry. I only know of one other person ever having it, a friend of my daughter's.
We are both fine now!

I have IGAN

Do you mean the kidney biopsy?

It was ok, hardest bit is laying flat for 6 hours afterwards....
And them "trying" to get you to pee in a bed pan!

I had to get up in the end and use a comode, for love nor money, could i pee in a bed pain.

After that it wasnt to bad.

Staying in a hotel to be close to the hospital, maybe a good idea, although very unlikely something bad will happen.

But if you are having 'just' a biopsy, You will fine after, So make the most of the hotel, a meal out and then a good book or an early night :)

@DontWantToAdult

That's really reassuring, thank you!

Do you really think I could go out for a meal and be that relaxed that night? That makes me see it in a whole new light. I was envisioning trying not to move incase my stitches broke and bleeding out over a hotel bed somewhere You can probably tell that I have been worse case scenario-ing this quite a lot

@mynameisigglepiggle I'm glad to hear that, good to see some full recovery stories. I hope both of you continue to enjoy good health

@HeIsAVeryBadBoy

I didnt have stitches.
Did your consultant say you would?

I think you could go for meal, yes, take it easy, But think you would be fine

You cant do things like picking up shopping or lifting.

But a nice relaxing meal will be ok.

You may not feel like it, as you may feel abit bluh... In that case, room service or a food delivery while laying in bed relaxing

You need another adult with you for 24 hours though...

My son has IGA (he's 4). Is there a FB page or similar that anyone can recommend? We are under the care of a pediatrician but I never feel like a get a good understanding of what I am supposed to do to keep his kidneys healthy. He has a rough time with colds and fevers.