Hsp vasculitis

[Mandy7402]

Hi since getting hsp vasculitis I've been in and out of hospital lots including twice in intensive care

[Woodentops]

Hi mandy when was you diagnosed. Did you come out of hospital recently. Hope your on the mend

Malcolm

[Mandy7402 in reply to Woodentops]

Got diagnosed 3 years ago in hospital at mo going home tomorrow have kept out of hospital since November which is good for me

[Woodentops in reply to Mandy7402]

Feel for you. Not nice being in hosp. I was in over Xmas. Came out boxing night then bk in after new year

[Woodentops]

Hope things get better for you. Know it's an uphill struggle.i got diagnosed with vasculitis in 1996 so know it's not a pleasant experience

[Mandy7402 in reply to Woodentops]

Thank you since being diagnosed I've met so many people with it

[Woodentops]

Was quite rare when i was diagnosed.they knew very little about it

[Suzym2u Moderator Vasculitis UK]

Mandy have you read this page on the VUK website vasculitis.org.uk/about-vas...

It is essential you are seen by a doctor who has experience of HSP (IgA vasculitis) as it can be difficult to treat and manage in adolescents and adults.

[Mandy7402 in reply to Suzym2u]

Yes I have very good rhumy and my kidneys are affected so have kidney doc to buy both docs at different hospitals I am 42

[Mandy7402 in reply to Suzym2u]

Just had a look it was like they were describing me lol I'm on methatraxte as well as steroids

[klc48a]

Hi Mandy I have been in AE with a rash they diagnosed as HSP go to docs they said. I have had blood protein in urine since last year and lots of back pain in kidney area. Docs tomorrow I asked to be referred to see a rheumatologist no referral yet and I wonder what tomorrow at Docs will bring.

[vascy_errol]

Hi Mandy

I also read the page linked by suzym above and thought it was describing me!!

I have had 2 "bouts" of HSP, once back in 2003 and the treatment was rest for a few weeks. I had skin rash on legs, lower trunk and arms, plus stomach and kidney involvement. All cleared up fine but I was left with suspected IgA nephropathy of the kidneys. I was regularly seen over the years, but that was a urine check, and general discussion. Then I had my second "bout" in Jun 15, which was more severe (in my mind anyway!), with ulcerated rash on my legs, plus kidney and bowel involvement. I was treated with steroids (40 mg pred) initially (by derm as already seeing them for psoriasis), but things got worse, and was treated with 500ml (I think) of iv methyl pred; treated by renal due to kidney involvement. Consultant told me usual treatment is 3 lots of the iv steroid, but as my case was deemed "mild" he only administered one dose. I was then kept on pred, plus azathiaprin. Rash went down and then reappeared even with rest, so discussed other treatment options and oral cyclophosphiamide was the next step, but I chose to stay on aza and see what happened. Luckily all calmed and I was deemed in remission at the end of sept 15. Gradually reduced pred and went pred free in Feb 16. I am now gradually reducing my aza, was on 150 mg daily and have stepped down 100 mg, and now on 75 mg; expected to reduce to 50 mg in a couple of months.. touch wood!!!

I thought my story may help to expand on the website, plus show that there can be light at the end of the tunnel; obviously we are all different and react differently to the treatments. Hopefully some of this will be of use, especially when in discussion with the consultants!! Go in with a list of questions and be firm to ensure that they listen to you!! Dont be afraid to ask the questions on the site here; there are also some pages on Facebook which may also help. Good luck and I hope things work out well for you.

[Woodentops]

I was lucky enough to be seem at the lupus unit now at guys bu prof graham hughes.they had there own unit until recently has merged with rheumatology .which is a ahame as its not as personal