Patient Comments: Henoch-Schonlein Purpura - Symptoms

What were the symptoms of your Henoch-Schonlein purpura?

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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Comment from: Concernedmom, 7-12 Male (Caregiver) Published: March 17

My son is 7 and was just diagnosed with HSP. He has been sick for a week now. The vomiting stopped after 2 days, but the fevers continue. Sometimes they are very high around 103 to 104. We have kept him on Motrin and Tylenol, but I just fear that we are putting way too much drugs into him. He has finally eaten a solid meal after one week, but I have to force him to eat anything. He would rather stay curled up in bed all day. I just wonder if antibiotics would help and what are the chances of my other kiddos getting this.

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Comment from: mayr, 3-6 Male (Caregiver) Published: February 24

My son was 6 when he got Henoch-Schonlein purpura (HSP), it started with his legs paining him. I thought it was just that he hurt his leg running around until I noticed a rash starting to form on his lower leg, I brought him to A&E and while we waited to be seen by a doctor his 2 legs had swollen up so bad that I had to put him in a wheel chair because he could no longer stand. It was then the doctor diagnosed HSP and until then I had never heard of it, it was a very frightening experience for us. He had to spend a few nights in the hospital and it lasted about 4 weeks. He is now 7, nearly 8, and it hasn't returned and hopefully it never will.

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Comment from: Maria123, 45-54 (Patient) Published: February 14

It was 40 years ago that I had HSP, it took ages for them to figure out what I had, my fevers were so bad I had to have ice baths quite a few times. I spent most of a year in and out of the hospital. I was on a drip for 13 weeks straight. My doctors tried everything and in the end they had told my parents to be prepared for me to die. One last treatment was tried and I recovered. It is funny when I read about HSP and they say a mild illness that you will recover from quickly and yet I know that I almost died of it.

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