Henoch-Schonlein Purpura - Experience

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What is Henoch-Schonlein purpura (HSP)?

Henoch-Schonlein purpura (HSP) is a form of blood vessel inflammation or vasculitis. There are many different conditions that feature vasculitis. Each of the forms of vasculitis tends to involve certain characteristic blood vessels. HSP affects the small vessels called capillaries in the skin and frequently the kidneys. HSP results in a purplish skin rash (most prominent over the buttocks and behind the lower extremities) associated with joint inflammation (arthritis) and sometimes cramping pain in the abdomen. Henoch-Schonlein purpura is also referred to as anaphylactoid purpura.

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Comment from: Chronic HSP mom, 7-12 Female (Caregiver) Published: June 16

My daughter got Henoch-Schonlein purpura (HSP) when she was 4 and 10 months old. She had upper respiratory infection for two weeks, then she started to have stomach flu and UTI (urinary tract infection) symptoms. Doctors misdiagnosed and treated her with UTI, constipation, and dysfunctional voiding, and gave her IV, antibiotics, GoLytely to clean her up for constipation, and put her on laxative. After two admissions and all wrong treatments, our friend's doctor suggested HSP. After third admission, she was treated with steroid. However, doctor tapered down the steroid too fast too soon that she relapsed. She was vomiting blood with abdominal pain, and she was back to steroid again. After four admissions, skin biopsy was done and HSP was confirmed. Tried to taper down the steroid a little bit slower but she relapsed again. Now she was having severe abdominal pain with bloody stool, she was NPO (nil per os), TPN (total parenteral nutrition), and steroid for another three months. After she was off steroid, she started to have ankle joints pain, and more protein and blood in urine. She was back in the hospital for the fifth time for IV steroid. Doctor decided to do pulsing steroid IV Solu-Medrol for 6 months, then she was off and finally pain and bloody stool free. However, every cold or virus she got, she flared up, needing antibiotics to treat. Kidney biopsy was done and it was mild IgA deposit. She was off steroid for 6 months then she flared up. She is 7 years old and we have been fighting this HSP for over 2 years now. Every cold or virus or allergy gets, she is having severe abdominal pain and bloody stool. Doctor said she is a very rare case, and nobody knows what to expect after this. Currently she is fighting ear infection for two weeks now with HSP flare ups which needed another pulsing Solu-Medrol IV. HSP is supposed to clear up itself, but recurrent with flare ups and chronic HSP exist like with my daughter. I was hoping to find more options, but it seems nobody has one here.

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Comment from: Maria, 19-24 Female (Patient) Published: July 09

I have been diagnosed with Henoch-Schonlein purpura (HSP). It started with red rashes on my hands and legs. Initially I had knee joint pain, but in the first day itself it got cured automatically. Later I consulted a dermatologist. I had no abdominal or join pain. My urine test result showed RBC count initially 10 to 12, later 20-25, though there was no urine color change. Now after a few months, still my RBC count in the urine persists the same. Now I am going to consult a nephrologist.

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