Patient Comments: Henoch-Schonlein Purpura - Symptoms

What were the symptoms of your Henoch-Schonlein purpura?

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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Comment from: jackiec43, 45-54 Female (Patient) Published: April 22

I was diagnosed with HSP in 2007 and had a very mild dose of the illness. In 2010 I started with HSP and ended up with ulcers on my legs. Since April 2010 there hasn't been a full a week that I have gone without having the rash. Some weeks are worse than others. I am totally drained – I suffer daily from joint pain in my arms, fingers, legs, and feet. I have been in hospital several times with a high blood count and blood in my urine. I take medication daily, including painkillers and steroids. It is so hard, because people don't understand how this makes you feel.

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Published: March 08

My 4 year old was just diagnosed with HSP at first doctor thought it was impetigo but once it spread from butt to legs and couldn't walk because of the severe ankle and knee pain. I took him to emergency room and found out it was HSP. I am told there is nothing we can do for him and that we have to let this run its course.

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Published: January 03

My daughter was diagnosed recently with Henoch-Schonlein purpura. She vomits for days at a time, gets a purple dot rash on her arms and from her waist right down to her toes. Her ankles and knees swell up to 3 times their size and she cannot walk. She also has abdominal pains that lasts for days. It has been 5 weeks since this started.

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Comment from: Kansas City mom, 3-6 Male (Caregiver) Published: January 03

My 5 year old was just recently diagnosed with Henoch-Schonlein purpura. We think his 15 month old brother might have it too. Three of my four kids were also just diagnosed with strep, including these two. The 5 year old cannot walk on his own, his left leg bothers him the most. He has abdominal pain much of the time (and a swollen abdomen and hips). Although he occasionally feels well enough to eat. I was advised to give something like protein shakes or pedia-sure if he won't eat, since at least that will put some nutrition in him. I am eager to see if the antibiotic and the codeine they prescribed for my 5 year old will help him recover from the Henoch-Schonlein purpura. We are two weeks into the Henoch-Schonlein purpura from the start of the symptoms, which were vomiting and high fever. Day four of the symptoms was when the pain and rash showed up. Two days later he started on prednisone, and by the end of that fifth day of treatment his purpura was nearly gone, but the pain has only gotten worse. The 15 month old is only three days into his symptoms, and the rash showed up yesterday for him, so we will see what happens with him. The strep will keep them from healing, so we are glad to have it diagnosed and being treated. This is definitely a scary time, and hard to see my children in so much pain. I sympathize with all of you who have gone through, 0are going through or will go through the same thing.

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