Patient Comments: Henoch-Schonlein Purpura - Symptoms

What were the symptoms of your Henoch-Schonlein purpura?

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: 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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