Patient Comments: Henoch-Schonlein Purpura - Symptoms

What were the symptoms of your Henoch-Schonlein purpura?

Comment from: MomOfThree, 13-18 Male (Caregiver) Published: August 13

My 14-year-old son has been sick for two months and was finally diagnosed with Henoch-Schonlein purpura. His first symptoms were a general feeling of malaise but then his stomach started hurting. He lost his appetite and though he was hungry, at times he was hardly able to eat. By the second week in July, he started with the rash. We initially thought a cat scratch had gotten infected but his pediatrician immediately diagnosed the 'rash' as blood pools under his skin (vasculitis) but wasn't sure what was causing this so ordered a ton of blood work. Over the weekend his 'rash' was worse and he was feeling worse so we went to the Children's hospital where they immediately diagnosed him with HSP. It's been almost a month now and he still does not have all his strength back. He has bouts of bloody stools and protein is present in his urine but so far, no blood in the urine although we have been cautioned to be on the lookout for it. We did have a second trip to the ER after the first experience with blood in the stools but they reassured us as long as it was not in his urine he was okay. After almost a month we are seeing feet/ankle swelling and he bruises easily. His stomach has stopped hurting, thankfully, but all he can do and feels like doing is resting. We were told at the hospital this could take up to 8 weeks to pass and that it can recur. They also said if the blood starts showing in his urine he would be put on long term steroids but they are trying to prevent that as patients who are placed on the steroids have a risk of greater reoccurrence. I hope this helps someone else. This is the craziest thing we have ever heard of and until now never even knew what this disease existed. I wish you all a speedy recovery!

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Comment from: ronika287, 3-6 Female (Caregiver) Published: August 13

My daughter is 6 years old and she fell over a curtain rod and sprained her ankle well day before that she was bitten by a lot of mosquitos and developed a rash. I took her to urgent care which just said she had insect bites and sprained ankle. Well next day my daughter was unable to walk and the other leg that was not sprained began to swell and had developed bruises on the bottom of her feet. So severe I had to carry her around. Brought her to the ER and that was when we were told she had Henoch-Schonlein purpura. She has red spots all over her legs and arms and swells mainly at night. It scares me because I thought that the insect bites gave her a disease and it was starting to take effect and seriously hurt my daughter. This virus is very painful to my daughter and she takes it well saying mommy I look like a leopard. I just wish the best for all the people diagnosed with this virus and hope my daughter doesn't have to live with this ordeal again.

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Comment from: kat, 3-6 Male (Caregiver) Published: July 12

My son had Henoch-Schonlein purpura when he was 6 years old. His symptoms included a rash just like the rash for meningitis, swelling of the hands, legs, head, genitals -- all on different days. There is no treatment and he had lots of bed rest. I had to check his urine daily for protein and if it went high I had to take him into the hospital. All in all he was ill for 5 months. He is now 21 and has not suffered since.

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Comment from: Frustrated, 55-64 Male (Patient) Published: January 06

I am 59 years old male - I got HSP three months ago. First I noticed bright red spots on my thighs. The next day my left ankle got sore and swollen. After that came stomach aches and diarrhea. After three days I noticed that there was blood in excrements - then I was sent to hospital. I was given antibiotics directly into a vein and some pain killers because doctors told me, that my small intestine was inflamed.

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Comment from: Leepa, 7-12 Male (Caregiver) Published: June 09

My son is seven and he was diagnosed with Henoch-Schonlein purpura today. He had a cold last week that is still clearing up. He has had a stomach rash for three days, red, raised and pinprick sized. Diarrhea and stomach pain this morning. No significant fever, no headache, no swellings. Pediatrician diagnosed this straight away -- he saw another case earlier in the week! All blood tests are normal. We're home, all good, just keeping an eye on him and my fingers crossed.

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Comment from: hrobinson, 7-12 Female (Patient) Published: March 21

I had Henoch-Schonlein purpura when I was younger. It caused swelling a lot of pain from my waist below. Luckily the Doctors who had seen me put me on some type of medicine to stop what was happenening to me. My legs and bottom had looked like they had just had a rash at first and it began at my feet then progressed up to my hips the swelling and pain came later on. I was too young to remember the names of the medicines that they had put me on but whatever it was kept from dying. If they hadnt done anything at the time that they did the Dr's said it would have exploded my heart. I'm thankful for what they did for me and that I'm perfectly healthy today and am now an expectant mother.

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