Henoch-schonlein Purpura.

[Yeprat]

Hi. My wife is being passed around GP's who admit no experience of this condition- Henoch-schonlein Purpura. Just had 1 blood test - still waiting results. No treatment. Both very worried about what we have read in terms of possible deveopments. Are there any experts in North Wales or North West UK who we can make an appointment to see?

[Hidden]

Have sent the e mail. Hopefully someone will be along soon with personal experience.

Lynn

[Suzym2u Moderator Vasculitis UK]

This is the new page on the Vasculitis UK website discussing HSP. I am afraid North Wales is a bit of post code lottery for treating and managing vasculitis. It is important your wife is seen by a doctor who has experience of vasculitis. It is also important your wife's kidney function is monitored. Please contact the VUK helpline.

[Suzym2u Moderator Vasculitis UK]

Sorry , this is the link vasculitis.org.uk/about-vas...

And the helpline vasculitis.org.uk/helpline

[AndrewT]

Dear Yeprat,

Please DO, as Susan suggests, get your Kidney Function tested. Is there a connection, between a 'Purple Rash' and Kidney Disease? YES THERE IS! It is a, very strong, indicator of Vasculitis/Auto-immune diseases. In my case it wasn't 'picked up' early enough-I suffered major Kidney damage, and was on dialysis for four years. I had a Kidney transplant, in July 2013-yes three years ago now.

Now I'm not trying to frighten you, half to death, really I'm not. You may not have anything wrong, with your Kidneys, al all-but PLEASE don't take that chance Yeprat, really don't.

I'm praying that I'm wrong here, I really am. I would be delighted if you 'came back', to me, having had all the tests, and told me I was completely wrong. I can absolutely assure you that I 'wouldn't mind', in the least.

I am sending you my, very best, prayers, and best wishes, Yeprat.

AndrewT

[Suzym2u Moderator Vasculitis UK]

I hope you guided them to the vasculitis uk helpline?

[Yeprat]

The 3rd GP we saw on day 10 of the rash & pains was great. He asked the right questions, did an examination, urine test & read the medical books with us. He suspected Vasculitis and referred us to the Acute Illness Assessment hospital unit the same day.

The surgery were also very helpful in providing copies of blood work and a full print of Medical history. This surprised us in terms of how many Sinus infections have been experienced in the last 18 months.

Bangor hospital appear to be doing all of the right tests and it feels like they are looking after us well. The lead Doctor states he has Vasculitis experience (we are now in Renal Unit) and they appear happy with kidney function and test results.

The rash has spread from lower limbs, to legs, buttocks, hips and now arms. Day 14 of rash and it appears to be easing in colour at first appearance point. We await biopsy results.

The aches and pains (previously on Calcium for OP indication) ebb and flow but in general appear easier. Swelling and red patches have left some bruising on arms.

A few IBS flare ups.

The help and support we continue to get from this site has been very welcome.

Unsure what testing and monitoring plan they have for us when discharge comes next week.

[Hidden in reply to Yeprat]

It sounds like they are taking it seriously and doing all the right things. Fingers crossed that things settle soon.

[hsp1 in reply to Yeprat]

Please keep us informed how things are going. I hope your wife is now much better. Regards Wendy

[hsp1 in reply to Yeprat]

Hello!

So sorry I mislaid your e.mail address I wonder if you could send it to me again thanks. Hope your wife is now feeling better and getting the needed support Best Wishes

Wendy

[Yeprat in reply to hsp1]

Hello again.

Hope 2017 has started well for you.

My e mail is jyeprat@hotmail. com.

Are you going to the symposium in Manchester on 4th March?

John.

[hsp1 in reply to Yeprat]

Hello, not sure about that one as have a few others lined up at moment. I'd be interested in any feedback though thanks

[Yeprat]

Thank you for concern. Feet havent really touched.....

On weekly tests now. The skin biopsy said negative IgA (HSP). They say the sample was negative but they still diagnose VHSP (now with no suspected IgA nephropathy). GPA still being discussed, but "no" symptoms.

Throat swab did show Strep A bacteria. I've calculated C has 15 sinus & 13 eye infections in last 18 months. Seeing ENT Specialist on Tuesday to review this.

Seeing Dr Nina Brown for an expert 2nd opinion at Salford RFT on 13th.

Purpura continues to reduce (35th day). Results say kidneys still clear. Swelling around joints has gone. Nausea and tireness easing and improving daily. Prognosis good.

Trace blood still in urine not showing any issue when checked. New trace blood in Stools , maybe IBS. Endoscopy and OGD camera waiting list 2 months.

The Bangor consultant and GP team have been very good. They are very stretched generally.

The IT systems and communication across departments needs improving, and obtaining copies of results between units is a work of art and un needed pressure on all involved.

Overview - a lot more positive.