Patient Comments: Henoch-Schonlein Purpura - Symptoms

What were the symptoms of your Henoch-Schonlein purpura?

Comment from: HSPMom, 25-34 Female (Caregiver) Published: May 13

Our daughter was first afflicted with HSP at age 6. She had bloody stools, vomiting and abdominal pain along with headaches and joint pain. The rash showed up after the first symptoms. We nearly lost her when the seizures started. She was treated with steroids and anti-convulsants and at one point stopped breathing. She was on steroids for months and had to have a home teacher for her first grade year. We thought that it was all over and she was generally healthy for about a decade. Then it gradually became clear that her immune system does not function correctly and that her immunoglobulin is not as it should be. She suffered with constant infections and took tons of antibiotics but problems always recurred. She is now on monthly IVIG treatments that sort of keep the infections at bay.

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Comment from: couge, 3-6 Male (Caregiver) Published: March 08

My son (4 years) was diagnosed with Hsp at the start of this year, it started with a sore swollen wrist then ankle and then his legs got covered in spots all within about 10 minutes of each other. I also have a daughter who has ITP, so wasn't going to muck around with it, I took him into the doctor who told me what he had. He then took blood tests and urine samples which showed protein in his urine. Since then I have been in and out of hospital 4 times in 2 months, waiting for some answers, Still waiting, he is booked in on Friday for a kidney biopsy so hopefully we'll get some then. He also was peeing bright red as if it was straight blood, and continued to get more and more spots, his genitals also swelled and went very purple (not sore), but very scary, these days when he gets home from school and all he can do is sit on a chair and watch tv, he's to sore to move.

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Comment from: Jules42, 35-44 Female (Patient) Published: March 08

I am a 43 year old female who has recently been diagnosed with HSP. It started with a general feeling of being unwell with a sore throat. Approx 5 small spots appeared on my lower legs and by the end of the day I was covered to my waist in a rash. I also had extreme pain in my knee joint and swollen hand. After 3 days the rash increased with very large lumps also appearing at top of my legs and waist the joint pain moved to my feet also and I was unable to walk. I was admitted to hospital where I had many blood and urine tests a skin biopsy, chest x-rays etc. I have blood and protein in my water still 6 weeks later and have recently had a kidney scan with talk of doing a kidney biopsy. I am still feeling unwell, extremely tired, still have rash although it has faded and looks like bruising. I continue to have pain in my joints and kidneys. Under specialists for rheumatology, dermatology and renal. If I can help anyone to share experiences.

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Comment from: CS5, 7-12 Female (Caregiver) Published: January 19

My daughter was 8 years old when she first got the symptoms of Henoch-Schonlein purpura. She was very weak for a couple of days, and then she got a rash on the lower part of her body. The rash lasted for about a week, and then she started to swell up on her ankles and knees. She was in a lot of pain also from her stomach ache. My daughter is now 10 and still has the symptoms from the HSP. She gets the joint pain and constant tummy pain. She is on Prevacid daily to help, but it only helps a little bit.

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Comment from: sam, 3-6 Female (Caregiver) Published: November 18

My daughter is 6 years old and has been suffering from HSP (Henoch-Schonlein purpura) for the past 4 years. She has rheumatoid arthritis and is on medication for it. I wonder if anybody else has had it for so long as it is very rare to have it long term. I am getting to point where I feel I can't cope anymore.

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Comment from: Kaylin, 13-18 Female (Patient) Published: August 01

I am 18 years old. I was diagnosed with hsp when I was 4 1/2, I had two outbreaks and after a very long and painful month the doctors finally told my mom and I the news. I never made a full recovery and my hsp has lead to multiple medical issues. I can not longer stand for more then 20 minutes at a time with out my legs and feet swelling, I had to have my gallbladder removed at 14, I have a bladder condition that has to be treated with medicine that makes my hair fall out, my intestines continuously bleed, when I scrape myself it scars over then immediately scars. My hsp has gotten worse as I have gotten older, few doctors have actually studied hsp so most doctors think I'm lying. My legs are always swollen my back continuously hurts, even sitting the wrong way for a short amount of time takes its tole. I get sick all the time even after taking medicine, cold or humid weather of any kind kills me. Doctors won't prescribe me any kind of pain medicine because they don't know what hsp is. Mine and my moms life revolves around keeping my pain at a level where I can stand it, just this morning I Was to swollen and in to much pain to get out of bed to use the restroom, (I had to be carried) this disease has forever changed my life in the most horrible way.

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