Henoch Schonlein Purpura (HSP for short) - anyone have any experience of this very random autoimmune illness?

[DorothyWhippleFan]

My DD1(15) was diagnosed with this disorder back in April and it is described on the NHS website as a mild illness. Not in our house, it isn’t. So many hospital admissions, including a 999 call but the ambulance was going to take too long. There are not many UK information pages about the disease.

Basically, my DD was out of school for seven weeks as she was so unwell. She is going into her GCSE year at a grammar school but she is still not fully fit. We were back in hospital earlier this week as her GP was concerned about blood and protein in her urine (signs of potential kidney and liver damage).

Please, does anyone know or understand anything about this disease/disorder and what we could possibly do to help improve my DD’s health (bearing in mind that she is a teen and her limbs have been covered in a very noticeable and livid rash for the past five months?

I don’t have any advice but I had HSP aged 17 during A’levels. Fingers and toes/feet so swollen that I couldn’t bend them at the knuckles. Awful rash etc.

Just wanted to share that it was back in the mid 90s, the GP had to get a big book off the shelf and dust it off to find the diagnosis, and I was never given any blood or urine tests.

I made a full recovery and I wish your DD a speedy one too. 💐

I had it as a child nearly 40 years ago. No lasting effects thankfully.
I don't really remember but my mum says I was unwell and in hospital a short while.

I had this as a child and made a full recovery. I was covered in the rash over my legs and was unable to walk for a short while with it - I remember my dad carrying me upstairs! It however was quite a short term illness. Ironically I have since been diagnosed with coeliac disease which makes me wonder if they are linked as both autoimmune diseases - I can’t however find any supporting medical evidence for this. It may be worth considering other underlying illnesses which could be making her reaction more severe and prolonging the illness somewhat. A quick Google found this support line - may be with a call as they may be able to give you some further information x

@Sensibletrousers yes, the swollen joints is possibly the worst symptom, notwithstanding having a livid and visible rash all over her limbs for five months now (not good for body confidence as a teenage girl). My DD is also registered blind and has other disabilities so she has been dealt a really raw deal with this condition on top. Do you happen to remember how long it took you to recover?

@Mexicansky thanks for responding and it’s good to hear that you have had no lasting effects as I read that it is quite common for repeated flare-ups.

@Confuddledandmuddled thank you so much for the information, I will definitely make contact with the support group. It’s interesting what you say about coeliac disease: there’s something going on with DD’s autoimmune responses. I have just remembered that she was badly afflicted with molluscum when she was about 10 and she had the spots all over her legs and arms for about two years.

My DD had this when she was little. She had painful, huge swelling in her knee and opposite elbow and of course the spots. We had to cancel flights back to Aus because the risk of kidney damage was too high at the time. This all kicked off after she had recovered from a mild virus. I would say that she is 19 now and fine, but her immune system hasn’t been amazing and she also has Raynaud’s syndrome which may or may not be a hangover from this.

Oh, and I forgot to state that many years after this, I was diagnosed with Ehler’s Danlos Syndrome, have other autoimmune issues (Hashimotos, Coeliac and Crohn’s as well as Raynaud’s as well.) and all three of my kids have lucked out genetically and have it too. I suspect once you have one Autoimmune problem, you start collecting more.

Our youngest had one episode at 18 months. Hospital for 4 days then follow up/blood tests, etc. for 6 months. 20 now, no recurrence.

Wishing your daughter all the very best best 💐

I had it five or six years ago, as an adult in my 30s, which is rare as I understand it's usually children who get it. I got away quite lightly, I had the rash over my feet and lower legs, and achy knees and ankles, but other than that I felt fine. I had some urine tests which kept finding traces of blood so I was eventually given an ultrasound on my kidneys which found no issues. I don't remember if I had any blood tests, though.

What was more unusual was that my sister had it a few years before I did, also as an adult. She had it a bit tougher than me and took longer for a diagnosis, but because she'd already had it I knew what my symptoms were pointing to, so I was able to go to the doctor and tell him what it was likely to be. As far as I know I've no lasting issues.

My son had it aged 7, mild, just the rash. Did wee tests for a few weeks but no repercussions.

One of DHs relatives had it 35 years ago as a 5 yr old and was very ill- got sepsis. Long hospitalisation and major surgery. He's ok now.

A friend's DD had it as a young adult- hideous blisters all over her legs, very swollen and tender. Seems to have made a full recovery.

It's an odd illness

Sorry can't help much, just to say my son had it , rash and swollen ankles but it eventually did go away. Had to go for urine tests for protein for a year. I Hope your daughters case does eventually go...

@NeunundneunzigHorseBallonz I am currently looking up all those other autoimmune conditions!

@pickledandpuzzled yes, my DD has the horrible bruising literally all over the bottom half of her body as well as the full length of her arms. At one point, the rash even spread to the skin around her eyes.

@MrsSkylerWhite thanks for the well wishes. I have the glorious task of dipping DD’s urine every day!

@MirrorMirror1247 its interesting what you say about the ultrasound as DD has had one but it was more focused on her bowel as she had such severe abdominal pain; I wonder if the ultrasound doctor would have checked her kidneys as well?

@flutterby1 your son fits the more usual pattern ie a very young boy. Do you happen to remember how long it took for the rash to disappear?

Ah, my husbands relative had a section of bowel removed because it was necrotic. That's why they are checking I expect.

I had it as a child about 40 years ago and it took a long time to be diagnosed so I was ill in bed for several weeks and in hospital for one night I think.

However I made a full recovery and have never had any related issues or recurrence since.

I hope your DD gets better soon.

The rash was only for 3 weeks x hoping it just goes away soon !

So sorry, just reviving this fairly boring thread to ask if those who have experienced HSP, particularly in late childhood, or the teen years, ever felt that stress was making the condition worse? DD1 and I have seen so many hospital doctors since her rash first appeared and I have asked a few of them if stress is a factor but I’m repeatedly told no. However, it seems - to my untrained medical eye - that whenever DD exerts herself more than usual or is facing an extra demand or deadline at school, then she has a full flare-up of symptoms, including the livid rash right across her lower body, the swollen and painful joints and consequent inability to walk, plus the severe abdominal pain.

I have other autoimmune conditions and stress 100% makes them worse!

@HelpNeededBeforeIHaveABreakdown thank you! Yes, it seems so obvious to me but I’m repeatedly told by medics that DD’s HSP flare-ups are not caused by stress. My mum has rheumatoid and osteoarthritis and her rheumatoid arthritis is severely triggered by any demands above the norm in life. There is no biological link, by the way, as DD1 is adopted.

Sorry to comment again 🤦‍♀️. But I always found stress made my coeliac disease worse. If I was stressed the reaction would be so much more severe - but again doctors said there was no correlation, there definitely is. I think stress massively affects autoimmune - have you had her tested for coeliac with the severe abdominal pain? I actually couldn’t walk with the pain it was so awful, it really is awful x

@Confuddledandmuddled thanks so much for commenting again, I really appreciate it since I am new as a parent to the world of autoimmune disorders. My DD’s is seeing the paediatric consultant again next month so I am going to raise the possibility of stress exacerbating the HSP and also ask her about other linked conditions. This has been going on since April and the rash and joint pain and swell is still just as bad (the abdominal pain comes and goes). I will have a look into coeliac disease now.

I’m just rebooting this thread for any old hands and/or newbies. So my DD1(just 16) still has an extreme (I will post a photo taken today. The significant rash has been ongoing since April 2023 and has NEVER dissipated. We saw a paediatrics consultant in November at our small town hospital who reckons it’s not HSP. We got a chance referral into Rheumatology at our nearest big city teaching hospital and that appointment took place a fortnight ago. It was a really thorough appointment, with a senior rheumatology nurse and a physio present. We still have no answers as all DD’s extensive bloods were fine, except for her Vitamin D levels which apparently are exceptionally low.

The next step is for DD to have a skin biopsy on the rash via the dermatology department at our big city teaching hospital. DD continues to have significant arthritic pains, her mobility is affected and the rash is Belisha beacon red currently as she has just sat her Y11 GCSE mocks (and not fulfilled her potential due to pain and chronic fatigue.

Would any autoimmune sleuths/self-experts have any suggestions/recommendations as this disorder is blighting her teenage life?

An extreme…RASH.

Ouch.

No advice from me. But the HSP rash I’ve seen wasn’t much like that. It was more like petecheal bruising and blood blisters.

That looks more like scarlet fever or measles- at least from the photo.

@pickledandpuzzled this rash has been ongoing since last April. There has literally not been a day since April 25th, 2023, that this rash has disappeared. She had scarlet fever as a toddler and she is vaccinated against measles. Thanks for bumping!

I think it looks like another type of vasculitis rash. (HSP is a type of vasculitis) I'm not a medic but have a really rare form of it and had a rash similar. Mine was diagnosed by rheum via a ct, biopsy and bloods.

Can you push for further tests and a scan?

Also have a look at www.vasculitis.org.uk/about-vasculitis

They also have a really informative Facebook group.

It could of course be something else, did the rheum suggest anything or look at any other autoimmune conditions?

Yes, sorry Dorothy I didn’t mean to suggest it was ‘just’ either of those. Just that it didn’t look quite right for HSP- though I’ve only seen it twice so am no expert.

I hope you get some helpful information and that it turns out to be something easily treatable for her!