Patient Comments: Henoch-Schonlein Purpura - Symptoms

What were the symptoms of your Henoch-Schonlein purpura?

Comment from: Samia, 3-6 Female (Caregiver) Published: April 11

My 6 1/2 year old 2nd daughter has been suffering with Henoch-Schonlein purpura (HSP) for over 4 years now she is one of the rare cases who has it long term. She"s had all sorts of tests done, 2 skin biopsies and is on medication for arthritis. She has monthly blood test is been seen by specialist doctors on a regular basis but there doesn"t seem to be a cure for it .At the moment I am very frustrated because it affects her everyday life a lot and there"s never any information on anyone who"s had it long term. Would appreciate if anyone has had a similar experience would be able to write about it.

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Comment from: BARB, 65-74 Female (Patient) Published: October 08

I was told in 2010 that I have Henoch-Schonlein purpura. On both feet, scabs came on each lesion, when one fell off the next one would happen. Now the scars are there to remind me. My feet are tender and I keep them elevated all the time with a fan 24-7, my toes are numb. I take Gabapentin 3 times a day because they burn. I only leave my house for doctor appointments and I know my feet will hurt and burn for 1-2 days with little relief no matter what I do because I had them down for my office visits. I have learned to live with this.

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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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