Patient Comments: Henoch-Schonlein Purpura - Symptoms

What were the symptoms of your Henoch-Schonlein purpura?

Comment from: telshyrose, 3-6 Male (Caregiver) Published: March 29

My son was a month away from turning 3 when he got a stomachache. Within two days, he started hurting and not wanting to be moved or touched. That night, his skin started turning a light purple and he developed red spots on his body. We took him to the ER and he was diagnosed with HSP. It took about two weeks before he was better. Six months later, it came back, and he was ill for another three weeks. Another six months after the second episode, it returned. I feared the HSP would permanently damage his kidneys. Luckily, he didn't have any lasting damage. It has been four years now and we have been very lucky that he has not had another outbreak.

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Comment from: 0-2 Male (Caregiver) Published: November 27

My son had Henoch-Schonlein purpura just before his third birthday. It started with a rash and vomiting, we were told initially that it could be meningitis and he was treated for that. It took a couple of days to get a correct diagnosis. He was quite ill with diarrhea and vomiting and arthritis in his knees. He had trouble walking. The rash got considerably worse over the next week, he had to be hospitalized three times. His scrotum swelled up, that was the cause of one hospitalization. It was a very stressful time. Eventually his symptoms diminished on their own. He was followed up for over a year. He is now 10 and has had no further problems. Every time he has a tummy ache I worry about a recurrence.

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Comment from: uh, 25-34 Male (Patient) Published: June 01

I'm 29 and have been battling HSP now for 2 months. I've been to 5 different hospitals now. This sucks! I'm ex-military and believe it might have to do with exposure to depleted uranium found in reactive armor. They have me on 60mg of prednisone a day along with 2 heavy pain killers. I have gained ample amount of weight and cannot workout in fear of a out break. I literally hate my life now! Can't work or even be active with my son.

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Comment from: john, 55-64 Male (Patient) Published: February 13

I am 55 years old and spent the Christmas Holidays with what turned out to be H.S.P. Apparently it has no age limit!. It started with a rash on my legs, and spread to 75% of my body with pain and swelling in my ankles, legs, and knees. After 3 days of hospitalization, numerous tests and visits by specialists, it was determined to be H.S.P. and the only treatment was antihistamine and pain relief. It cleared up within 2 weeks, and now 3 weeks later it has reoccurred, so I will be taking antihistamines and otc pain meds to save the $25000 it cost me (since I have no insurance) for the hospital costs.

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Comment from: Mummy, 3-6 Female (Caregiver) Published: January 10

My three year old was diagnosed the HSP 10 weeks ago and all of the symptoms are still present. She currently has the rash all over her legs (this has never left her), has had continuous problems walking, standing and sitting, her hands are currently so swollen she cannot pick up her cutlery or crayons. Two weeks ago she could not open her right eye as it was so swollen, she has had intermittent tummy ache and she now has black stools. I was told these symptoms would last for 6 - 8 weeks but they are showing no signs of going. My concerns are the amount of ibuprofen she is having to control the pain and the swelling. I just hope this has no long-term effects on her health.

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Comment from: Gavinsmom05, 35-44 Female (Caregiver) Published: November 16

My son is 6 years old. He came home from school with both his ankles swollen and red dots all over both legs. We thought he had been bitten and was having an allergic reaction. The next day his wrists started swelling and the rash of red dots had spread. He was having difficulty walking. We immediately went to the pediatrician and they diagnosed him with HSP. His penis, ears, ankles, wrists, knees, and fingers swelled up. He has had hard knots on his scalp, groin, and calves. He has the huge red spots all over his legs and buttocks. We are on day 6 and he has had a second wave of rash which now looks like raised bug bites. I can only pray that this will be over soon!

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Comment from: jackson, Male Published: October 26

My case of Henoch-Schonlein purpura (HSP) was more serious than what was described. I have had it for seven years, and I am now 14. I had to have a couple of operations and take steroids and another drug for six years. The side effects made things difficult for me. I let out lots of protein and saw a specialist. The doctor said that it is as if there is a hole in my kidneys, and all of my protein is leaving my body. Sometimes I saw blood when I urinated! (I'm male.) It was very stressful, and I am going for another check-up in six months. Wish me luck!

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