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?

@WhoPooedInTheFridge thanks so much for your reply (loving your user name by the way - who did?!) The paediatrics rheumatologist didn’t suggest any other diagnoses but she has referred us on to dermatology. Apparently, DD’s latest bloods (taken November 2023 don’t show anything remarkable except for the severe vitamin D deficiency). Do you mean a CT scan? DD has had scans on her joints and ultrasounds on her bowel and internal organs because she had crippling and debilitating abdominal pain in the early weeks of her disorder and had five lots of hospitalisations.

Thanks for the link, I will check it out.

One other thing to mention is that DD is adopted so I know that there can be heritability factors for certain autoimmune conditions but I have no access to her birth family medical history.

@pickledandpuzzled no problem, I was just grateful for a reply and any suggestion!

Just a hopeful bump and also to ask if anyone here has experience of a skin biopsy?

‘Fraid not, bumpety bump.

You may be better with a new thread- people who don’t know about HSP might not look here.

Compared to my child, that's not extreme at all. It can get so much worse. It took many months for us to find the right medication. Finally did though. Would be happy to chat about it privately.

My child has had a few.

@ComingHomeAgain I have pm’ed you (I think!)

Thanks. I have replied and let you know what medications we have tried and what is actually working finally. :-)

My daughter had this terrible illness when she was 7 turning 8. A few trips to A&E before diagnosis and eventually back in hospital for 5 days. She had the swollen joints and rash but what tipped the scale for her was that she had internal sores in her stomach and was vomiting blood.

She was given steroids for 4 days and they helped her massively. It still took many more weeks for the rash and swollen joints to subside and she has to have a urine and blood pressure test yearly for the rest of her life. But she is fully recovered except for a lot of health anxiety and a phobia of needles!

Sending you lots of healing thoughts xx

DD has it when she was about 7;Swollen joints andrash. She made a fairly rapid recovery and remembers it chiefly because I made her go to school in slippers as her feet were too swollen for shoes.
My niece also had it and again has been lucky not to have had any problems since.

Dd had this aged 5 to 6. Came and went, then came back again. She was referred to a paediatric nephrologist , had a skin and kidney biopsy.

Was put on steroids and azathiocine* (if I remember correctly ) and was on them for a few months. Gradually tailed them off and the hsp didn't reoccur.

Poor kid, that looks awful. If it helps, I had HSP at 13 and it looked very like that but not as many spots/as severe. I did have awful abdominal pain, joint pain and fatigued but as far as I remember I was off school for 3 months, no recurrence. Hope you get some answers and respite soon.

It couldn't be a coeliac rash, dermatitis herpetiformis (probably not spelling that right) could it?

Or this - cutaneous vasculitis?www.dermatologyadvisor.com/slideshow/general-dermatology/10-dermatologic-signs-of-celiac-disease/

Poor kid.

Having had it go on so long I think I would be looking at other autoimmune triggers which could be making this worse. Coeliac is the obvious one - has she been tested!

So, it’s been a long time since I re-posted here. We are now 13 months in. The leg rash is still extreme. We were referred on to our nearest big city teaching hospital. So sorry for the royal we when it is DD1 with the symptoms (but me with all the fear and stress!) The diagnosis came last week and DD1 has vasculitis and is seeing the paediatric rheumatologist and the paediatric dermatologist, to begin a course of methotrexate.

Seeing the consultants TOMORROW.

Good luck with it all. Once my dd (younger at the time) was on the immune suppressing drugs the hsp rash did go.
She had kidney involvement and should always have annual check ups for that reason.

Do you know which type? Have a look at the vasculitis uk group on Facebook - they are so helpful and have a helpline thta you can call for queries and chat. They can advise where there is a specialist for which type it is - a paed rheum or derm probably hasn't seen many cases and depending what type it is, maybe none.

Hi, so we saw the paediatric rheumatologist and paediatric dermatologist yesterday: the diagnosis is small vessel vasculitis (non-specific). DD is meant to start her methotrexate tonight (8 x 2.5mg pills) but she has come down with the vomiting bug that has wiped out DD2’s class (10 of 20 children off sick on Thursday). Terrible timing! I’m going to have to hold off till next weekend now as we were warned that she could feel extremely nauseous, hence the advice to take the medication at the weekend. DD just wants to be able to wear summer dresses without everyone staring at her extreme rash that has not ever dissipated in 13 months. She already has such a lot to contend with as she is registered blind and is also diagnosed with autism and ADHD, among other complexities.

Sounds v tough 💐

I'm glad you got some answers, sounds like a horribly long road.

I was going to post that DD had HSP and it was brutal but did clear after about 10 weeks.

My Dad took methotrexate for RA, and he didn't tolerate the tablet version very well so he went onto a weekly injectable pen which was much better for him. He was initially on a very high dose as his hands/knees/shoulders were so swollen and painful but that was lowered as he improved.