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

(73 Posts)
HeIsAVeryBadBoy Sat 04-Jul-20 14:21:19

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?

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GoldenHoops Sat 04-Jul-20 15:55:04

Is it a form of vasculitis, my mother has it and it affects her kidneys.

CallmeAngelina Sat 04-Jul-20 16:02:07

Well, not sure I can help, but didn't want to read and run. DD had this when she was 3 and it was horrendous. But a child dh knew was confined to a wheelchair and I have heard of children who have had to have amputations, so I don't think it IS necessarily always less serious for children.
We caught dd's early, and she was whizzed straight up to Great Ormond Street before the damage to her kidneys was too great. She was pumped full of steroids for about 6 months, and made a complete recovery (although the kidney damage is permanent). She continued with regular checks until she was 18 though.
Good luck with it all - it was worrying enough when we had immediate treatment, so it must be very difficult for you at the moment.

SandysMam Sat 04-Jul-20 16:06:57

I have kidney problems but not caused by those things. What is your eGFR OP? Will you need dialysis and a transplant eventually?
Kidney Research UK is my go to resource for kidney stuff, very helpful. Also, you might have a renal counsellor you can access through your renal unit which might help you come to terms with it flowers

HeIsAVeryBadBoy Sat 04-Jul-20 16:41:27

Oh gosh @CallMeAngelina, I'm so sorry to read about that and didn't mean to sound dismissive re: children. It's obviously dangerous for everybody but I just meant that 99 percent of online literature is aimed at parents of children with HSP. And most of it is quite reassuring in terms of statistics. Adults with HSP have much less hope for a good outcome generally. I hope your daughter will be okay from now on. Is her life impacted at all by it now?

@SandysMam I think that all signs point towards dialysis and transplant in the not too distant future. I saw my consultant last month (at my local hospital) and she wants me to go for an isotope test and biopsy to figure out exactly what's happening but the nearest specialist renal unit is closed so I can't have the tests I need. So that's left me in a bit of a quandary. I don't know what I'm supposed to do. It's really confusing in that it's really serious but I can't access treatment and I'm confused on how seriously to take it. Like most of the time, I just get on with things (and I've had over a year until now, without a relapse, so I pretty much forgot that I had it), and then I relapse and read stuff online and worry that I could be looking at less than a few years before my kidneys pack up. That in itself makes it difficult to talk to others about it because I don't know what to say because I am myself quite confused.

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HeIsAVeryBadBoy Sat 04-Jul-20 16:43:30

@GoldenHoops how long has your mum had it? Does she have dialysis or has she retained enough kidney function to not need that?

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GoldenHoops Sat 04-Jul-20 23:31:24

HeIsAVeryBadBoy
She is 84 now and was diagnosed about 3 years ago but the consultant said she had probably had it a long time but it just wasn't picked up. She isn't on dialysis but takes various meds including steroids. She is seen by the renal clinic every 4 months. They have cared for her so well. She had to have a biopsy on her kidney and loads of other test for the first year.

Crunchymum Sat 04-Jul-20 23:38:13

@HeIsAVeryBadBoy

Have you not been offered a telephone / Zoom appt? I'd request one as a starting point.

Crunchymum Sat 04-Jul-20 23:40:15

You can't get your diagnosis but you need an action plan. Get on to your consultant.

HeIsAVeryBadBoy Sat 04-Jul-20 23:51:48

@Crunchymum

I have another appointment with the consultant in August but its supposed to be to discuss the results of the tests (which take place at another hospital). But the other hospital say they can't get me in for the tests because they are not doing anything at the moment. It's all a bit of a mess.

I think I'll keep my appointment with her though because I have new blood test results to discuss with her, plus a new rash and I've been measuring my blood pressure at home. It's through the roof so maybe she can prescribe something for that.

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pandafunfactory Sat 04-Jul-20 23:53:16

What's your GFR? Planning for transplant (and dialysis) should take place if it's below 20. Your consultant can map the decline and estimate when you will run out of kidney function.

ExhaustedBeyondBelief Sun 05-Jul-20 00:37:07

I have IGA

Its really not that rare.
So many groups on faceboom

ExhaustedBeyondBelief Sun 05-Jul-20 00:42:59

@pandafunfactory

Egfr is based on lots of things and can no way be estimated when kidney function will decline to the point of dyalisis / transplant.

Controlling blood pressure with medication and any protein leak from your kidneys into your urine are the main things the consultant will start to do and then look at other blood tests like potassium and sodium levels and you will have an opportunity to talk to a dietician if needed who can go through foods that are not recommended etc. How much fluid you should drink
Also your bloods will show if you need medication like iron and folic acid

ExhaustedBeyondBelief Sun 05-Jul-20 00:43:45

I have 2 autoimmune disorders as well as IGAN and 2 other types of kidney disease and other health issues as well

pandafunfactory Sun 05-Jul-20 01:01:55

@ExhaustedBeyondBelief that's just not right. Gfr testing is adjusted for a small number of factors including ethnicity but it's a lab test measuring blood chemistry and of course it can be mapped over time, like any test can. This can show whether kidney function is dropping or stable or indeed rallying. It's really important for the op to know her numbers and the trend. You can then extrapolate the current rate of decline to give an indication of when dialysis might happen. Nothing is guaranteed, sudden drops can happen but somebody with a low gfr which is not budging in five years of testing is in a different position to somebody who has lost 30 points in two years for example. If your doctors have told you dialysis can't be predicted you need to go back and ask them to go over your tests with you to look at the rate of decline.

IllustriousToad Sun 05-Jul-20 01:14:46

Just to echo, finding out your gfr and being able to measure it and see a trend over time is really important and will help you predict when you might need dialysis - although that stage maybe be a bit earlier or later for some people. I don't have either of those diseases but do have kidney disease and am waiting for a transplant and due to start dialysis soon. There's a support group on FB called kidney care uk which is worth checking out, lots of people with those issues on there smile

ExhaustedBeyondBelief Sun 05-Jul-20 01:20:53

@pandafunfactory

Actually you are wrong

Ofcourse every time you have a blood test it can show you if your egfr is worse, but it can change alot on a weekly basis, one week it could be 40, the next 55

IT CAN NOT tell you when you will need dyalsis or a transplant as there are LOADS of factors and everyone is different

You could be in stage 3 for 20 years then all of a sudden drop into kidney failure or there maybe a decline with every monthly blood test for years then you level out

I have been living with it for years and years and have blood tests every 2 weeks.
My EGFR goes up, goes down, depending on lots of things.

My consultant CAN NOT tell me how long i have untill i will need a transplant

pandafunfactory Sun 05-Jul-20 01:29:18

Indeed there's very little value in looking at the numbers week to week. A gym visit or a mild tummy bug will tweak the numbers. Most patients won't be having bloods that often anyway. There is however value in looking at the trend over time. I don't think arguing over this is going to help the op so I won't be posting again but it's really important other people reading this thread understand that trend in gfr is a useful tool and most patients aren't stable for years then plummet. It's liable to alarm people to say that and it really isn't true. Many patients can plan for pre emptive transplant or dialysis years in advance - and make life choices using that information. I can see your illness is more unpredictable which must be tough but that isn't universal

ExhaustedBeyondBelief Sun 05-Jul-20 01:34:11

@pandafunfactory

Everyone is unique and i talk to lots and lots of people.

Some stay stable for their whole lives

Some are stable for years but needed a transplant in time..

Egfr is based on ethnicity, weight, height and other factors. As well as creatine.

It really is not as simple as you make out.

Im not scaring anyone.
Its about being realistic and if the OP goes onto the facebook kidney groups she will hear the above stories every day

Pineapplemonkey Sun 05-Jul-20 01:48:54

@HeIsAVeryBadBoy
I have this, I was diagnosed almost exactly 4 years ago. They thought it had burned itself out after about 9 months but it made a comeback and I’ve been on azathioprine now for about 2 years which seems to keep it at bay (although that meant I was/still am in the shielding group despite being remarkably healthy). I had kidney issues to start with but they’re fine now and I have blood tests and renal appointments every 3 months and the occasional rheumatology one. I’ve been told it’s fairly rare in adults, my gp hadn’t seen it before and the renal dept seem to know sod all about it, basically just keep giving me immune suppressants and blood pressure pills. My inflammation markers have always come back as high (ESR and CRP), even now but nobody can figure out why, I’ve had so many tests but no answers, rheumatology sent me for a full body pet scan recently just to see if they could find anything but no, they couldn’t find anything wrong. I still itch though, a lot. I have an album of photos on my phone of my rash that I keep to show doctors, anyone who’s ever seen them (inc doctors) says it is the worst rash they’ve ever seen. I still have nightmares about the pain but have to think myself lucky I haven’t got kidney issues any longer.

SandysMam Sun 05-Jul-20 07:26:40

Sorry to everyone suffering kidney problems, and to you OP, it’s rubbish. A silent disease that no one really understands and the whole “oh you can just get a transplant and you’ll be fine” malarkey!!
Waiting waiting waiting for the day to come, but never really being sure what that day will bring.
I found a lovely book on amazing called staying alive by Jan and Alan Cooper, it’s a collection of short stories. I find it really comforting, particularly when waiting for blood results which I always find hard.
Good luck all flowers

SandysMam Sun 05-Jul-20 07:27:15

*on Amazon

fairplay Sun 05-Jul-20 07:32:37

I have iga. I was diagnosed 12 years ago (at 25). The consultant estimated I would be on dialysis within 5 years, advised me to have a family etc.

I couldn't start medication for BP until I had finished having children and breastfeeding. Thankfully, my kidney function stabalised. I had another biopsy last year and there was no longer iga present, but, due to the loss of protein the damage to my kidneys is continuing.

It is an unknown disease and there is still a lot of research happening into discovering more about how the disease behaves.

HeIsAVeryBadBoy Sun 05-Jul-20 15:25:06

Wow! So many responses since I last checked!

I'll try to catch up now. To those asking about my GFR, I actually don't know but I'll be sure to ask my consultant when I go back to see her next month (appt on 6th August).

Thanks also for all the resource suggestions everyone. Right I'll try to answer some individual questions and points now!

@ExhaustedBeyondBelief I don't have social media so maybe I need to get myself on there. I don't know anybody with IGA (although I know somebody who knows somebody!) and whenever I mention it, nobody has ever heard of it. And that's even more the case for HSP. I have no idea of the stats though. Good to know that there are others out there (in a way, I wish nobody illness) but I was starting to feel really isolated. Thanks for replying to me smile

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HeIsAVeryBadBoy Sun 05-Jul-20 15:35:56

Many of you seem to be going through the same sort of questions that I am, even though some of you have been living with this for longer. No hard answers on what causes it or what exactly is happening etc. For somebody like me (I like to know why something is happening) that's really difficult

Does anybody have any suspicions of what caused it in them? Do you think that it's just genetic and that's that, or did your illness emerge for the first time after you'd just had a bug or something?

I was going through immense stress when it all started for me, so I tend to think that's what kicked it off for me. And now, if I have any life stress (even in a smallish way) that's followed a few days later by kidney pain, and then the rashes. I don't know whether I'm drawing false correlations though.

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