Patient Comments: Henoch-Schonlein Purpura - Symptoms

What were the symptoms of your Henoch-Schonlein purpura?

Comment from: Amy, 3-6 Female (Caregiver) Published: July 24

You never want to go through Henoch-Schonlein purpura, but if you do, be prepared. And if you see things that are not normal, you're not crazy! I had to experience this nightmare. Today my daughter is doing great. But when she was little she lost so much weight and nearly died from weight loss. You get an endocrinology doctor, we did and he was the best. Referred us to Children Hospital and we had to go there weekly.

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Comment from: henspeaking, 35-44 Male (Caregiver) Published: July 24

My husband was diagnosed with Henoch-Schonlein purpura (HSP) about a month ago. It began in his ankles and the rash broke out. He has arthritis and diabetes. He is 43 years old and is in some terrible pain. He was hospitalized for three days and came home with medications such as pain relievers, naproxen, stomach and Benadryl. His lesions were healing up and then the outbreak came again. The steroids they gave him in the hospital made his sugar go sky high and now he is on insulin. His legs look really bad and now they have an odor to them. I have been trying to do some research and to no avail. I have taken pictures to document this ongoing study. We have no idea of what to do or where to go next. Funds are limited.

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Comment from: michelle, 13-18 Female (Caregiver) Published: April 19

My daughter is 15 and was recently diagnosed with Henoch-Schonlein purpura. It started out as a rash on her legs and swollen legs. She's going through her exams at the moment, and she has now got swollen elbows and her wrists are swollen. She's in bed and cannot move. She's in so much pain and cannot move. She cries all the time. It started out from a cough. I guess it's in its early stages

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Comment from: Lucy, 45-54 Female (Patient) Published: January 11

I was six when I got HSP. I didn't have a rash but had blood in my urine and my ankles swelled. The pain in my stomach was constant and I have to say I have not experienced anything as bad since, even childbirth! I ended up in hospital as did two of my classmates, whose kidneys were affected. School didn't know how we had all got HSP at the same time. Once I was given the correct medicine I felt better immediately.

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Comment from: cclaiborne, 0-2 Female (Caregiver) Published: July 12

When my son was 2 years old his knee was huge swollen and he had these red dots all over his arms, legs, and abdomen. We took him to the ER and they ran x-rays and could not find anything so they sent us home. A couple days later the rash got worse and he got a lump on his back spine as well as his knee. The ER put a full length cast on his leg because they could not figure out what was wrong with him. Several days later his other knee swelled up so we rushed him to the ER. While in ER they went to take a urinalysis and his scrotum was bright purple and the size of a grapefruit. They admitted him and ran test after test after test. They had no clue what was wrong with him. They finally sent him to a doctor in UCLA and that doctor diagnosed him with HSP within five minutes. We opted out of doing the steroid treatment and his symptoms lasted him around 2 months. Things that would swell up was his knees, his scrotum, his elbows, his spine and the side of his head with the red dots all over his body. He was unable to walk when his knees and scrotum were swollen. He is now almost 16 years old and is as healthy as can be.

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Comment from: debra_denton, 7-12 Female (Caregiver) Published: July 08

My son had HSP 20 years ago and it is a very serious disease. We almost lost him several times and he was in the hospital 7 weeks. The only cure is high doses of steriods and hopfully catch it early. My son was first being treated for Rocky Mountain Spotted Fever. If he had of received treatment for HSP right off the bat he might not have gotten so sick.

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Published: March 29

My son was diagnosed with Henoch-Schonlein purpura at 4 years old. It started with his ankle swelling. Well I thought he had sprained it or something but then his head swelled up. Took him to the doctor and they said it was an allergic reaction to a bug bite. Well it didn't go away 2 days later so I took him to a hospital and they said he had an ear infection. Two days later his private swelled up to the size of a grapefruit and I had had enough. I took him to the local Childrens Hospital where they diagnosed him with HSP Nephritis. It settled in his kidneys and at one time had to be put on life support! He is now 11 and still on high blood pressure meds and others and sees a nephrology doctor once a month. This was the scariest ever for me!

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