Patient Comments: Henoch-Schonlein Purpura - Symptoms

What were the symptoms of your Henoch-Schonlein purpura?

Comment from: cdemchak, 35-44 Female (Patient) Published: November 13

I am 35, I was diagnosed with Henoch-Schonlein purpura (HSP) last year. I hurt, my joints hurt a lot and back when I was younger I was getting a lot of upper respiratory infections. I went to the hospital for the rash on my legs, and it was working its way up my legs and was very itchy. I thought it was poison ivy but the doctor told me that it was not and all he told me was to take Benadryl and the spots went away. Now I have joint pain and from time to time abdominal pain to the point that I want to cry. So far I have not had anything happen with my kidneys, but I do have the swelling in my feet and ankles. My lower back hurts and I have gotten blisters on my legs and they just pop up instead of the rash.

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Comment from: 25-34 Female (Patient) Published: October 13

I was diagnosed with Henoch-Schonlein purpura just a few days ago. I'm a 30 year old female. The first thing I noticed was tiny red dots on my lower legs. I first thought it was just razor burn so I got a new razor, but then it continued to spread. About the same time I started to notice that my ankle was a little bit tight. The rash spread with each day and the right ankle kept feeling like it was getting harder and harder. A large purple bruise-like area appeared around that ankle. Within about two weeks, my ankle was so swollen I could hardly walk. I was in agonizing pain just to stand up. I started on prednisone the next day and the ankle seemed to feel better by the next morning. I was so excited that I was able to get up and move around but that evening it started to hurt again. I have found that staying off your feet and icing the joints helps. Now I am extremely itchy though. I don't know if that is in anyway related or not.

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Comment from: Racquel, 35-44 Female (Patient) Published: March 24

I am a 44 year female who was bitten by a brown recluse spider. After a day of intense itching, I developed the Henoch-Schonlein purpura spots. That was 3 years ago. I still suffer with my headaches, stomach cramps, joint pain and kidney issues. Occasionally I still get the spots.

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Comment from: Jillnz, 19-24 Male (Caregiver) Published: November 04

My son had a bad case of Henoch-Schonlein purpura (HSP) at age 5. It was awful (pain, swelling, and not being able to move or walk), and his spots turned into blood blisters. I feel it really took a year before he was back to himself. He had protein in urine and had regular blood pressure (BP) checks that seemed good. He never got it back but at age 17 he developed high BP. We did all the tests and everything came back normal including his kidneys. He sees a cardiologist 1 or 2 times a year for a stress test. He is on 2 types of medicines to help control it. He is now 22. He is very fit, healthy, eats healthy and high BP does not run in the family. We have no idea of the cause, I would think it's from the HSP but we can't find anyone else that this has happened to.

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Comment from: speduk8rs, 55-64 Female (Patient) Published: June 04

When I was a 13 year old, I developed a rash on my legs, my mother treated it as poison oak. After a week of the rash, my mom had me stay with one of my sisters. I had severe stomach pains so I was given aspirin for the pain. I stayed on aspirin for about 2 weeks and one morning I woke up sick to my stomach when I went to the bathroom I started to pass blood through my rectum and throwing blood up at the same time. I was hospitalized for 6 months before a diagnosis was made. I had one of the worst cases seen in that hospital. I had to go to a kidney doctor for a year. Then when I was in college I developed a rash, I went to a dermatologist who told me I didn"t have Henoch-Schonlein purpura (HSP), he did a biopsy and when the results came back, sure enough it was HSP. This time it was a milder case than the first time. I have a scar on my kidney and am being watched to make sure my kidneys work properly. The pain is so horrible, that I had to have very strong pain killers to be able to let covers touch my skin. Now I am in my 50s, I have scarring on my Kidneys.

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Comment from: M, 45-54 (Patient) Published: September 21

I am 45 years old and was first diagnosed with Henoch-Schonlein purpura 20 years ago. I was so sick with purpura all over my body. I was put on chemotherapy a few times because the disease was so out of control. I was in remission for 16 years and all of a sudden last week the purpura appeared with a vengeance. I just had my first round of Robaxin IV. I really hope this works because the chemotherapy (Cytoxan) is not that wonderful for your body.

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