Patient Comments: Henoch-Schonlein Purpura - Experience

Please describe your experience with henoch-schonlein purpura.

Comment from: 25-34 Male Published: September 05

I was about 6 or 7 when diagnosed I was with HSP. In total, the ordeal lasted about a month or so. I was hospitalized for about a week or so. Initially, it began with a speckled rash on my legs with no pain at all. A day later, my ankles and feet were incredibly swollen and caused significant pain even just lying still. My family doctor was unable to diagnose it successfully, and upon referral to a pediatric specialist, we knew what we were dealing with. The swelling affected my entire body, even my skull. Sleeping was nearly impossible as the pressure of my head on a pillow would cause tremendous pain. Treatment was intense (blood taken daily for testing) and thankfully successful. I'm not sure of the exact treatment, but I know steroids were involved, most likely prednisone. I've not had any problems since. I am now 25.

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Comment from: marcus, 25-34 Male (Patient) Published: February 26

I had Henoch-Schonlein purpura when I was 7 now I'm 25! My infection lasted for months and it led to kidney failure! I'm on medication still but I'm fit and well! I went through it all!

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Comment from: shirley, 13-18 Female (Caregiver) Published: November 18

My granddaughter had this when she was about 7 now she is 16 and now is back in the hospital with it again. I hope they can help her, I guess she will always be prone to it since she's had it already; so far it has not affected her kidneys I hope.

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Comment from: bitten, 25-34 Female (Patient) Published: August 08

I had Henock when I was twenty three years old. I am an Indian female living in South Africa. None of the public or private medical care could diagnose this until the proper tests were done a skin biopsy was taken etc.. When I first experienced it that weekend I was rushed to hospital due to excruciating stomach ache and vomiting, nothing helped their meds made it worse. I was in and out of hospital for six months, very little intake of food, constant stomach ache, extreme acidity in the stomach and reflux, lost fifteen kilos and was ready to give in. Thanks to my parents who went through it all with me. Day and night I overcame. Have fortitude. The best treatment was steroids -prednisone-for six months, drink lots of water slowly but surely drink it all up. Ice blocks to cool the stomach and a bit of egg nog if possible to treat the ulcer. Tremahexel for the pain allowed me thereafter I recovered. Any person that experiences this to its full might will know how important support and prayer along with good medical care is required.

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Comment from: Marandtell, 3-6 Female (Patient) Published: August 08

When I was really little, about three or four, I had a weird bump in my spine. Later the doctors found out it was HSP. Since HSP is so rare, many people don't know what it is. But I do. It was very scary for my mother. I don't remember much of it. I have some arthritis in my fingers now. I couldn't walk. But I'm luckier than lots of people who get it.

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Comment from: Denielle, 25-34 Female (Patient) Published: July 17

I am 27 and was diagnosed almost 2 months ago with HSP. I started with a small rash similar to bug bites on my ankles then soon became larger, and larger. I didn't have symptoms besides the rash until a month later. Extreme headaches, knee swelling, body aches, and kidney pain. A few weeks have past, most symptoms gone besides the embarrassing rash, considering its summer time and I'm in winter clothing. Reading every post I could the best solutions everyone has said is to avoid sun, take ibuprofen for inflammation including the rash, tons of vit C, avoid wheat especially and flour. No smoking, drinking, or chocolate. Try Epsom salt and oatmeal baths. I hope some of this helps, I'm still working on it my self. Best of luck!***

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Comment from: JC, 55-64 Female (Caregiver) Published: July 02

My father has recently been diagnosed with HSP at the age of 58. He is also ex-military as someone posted that they were as well. He is being treated at a VA hospital in RI. His intestines, and kidneys have been affected severely, probably due in part to a late diagnoses. He was sent away from one hospital, and spent two weeks in another, until symptoms subsided. When symptoms returned he went to the VA, and is now being treated with a mild chemo. He was on steroids, but they were making the stomach issues worse. This has been going on since late April, and he was only diagnosed about three weeks ago. Not only is he on the chemo now, and a new steroid, they also have him following a diet similar to that of a person suffering from Chron's disease.

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