Patient Comments: Henoch-Schonlein Purpura - Experience

Please describe your experience with henoch-schonlein purpura.

Comment from: Dejamich, 45-54 Female (Patient) Published: November 07

I was diagnosed with Henoch-Schonlein purpura (HSP) when I was 3 in 1973. I was misdiagnosed (they said I had rheumatoid arthritis) for 4 days and got progressively worse. It started on my lower legs and moved up my body. I was throwing up blood, was not eating or drinking. I had nose bleeds often. My mother brought me to another province and they diagnosed me right away. But by the time I was diagnosed they doctors thought I was going to die. I can still remember being in the hospital, I guess it was traumatic enough for me to remember. They fed me 6 times a day and advised total bed rest for a month. Anyhow I have never gotten HSP again but it can reoccur as per what the doctors told me. Only problem is they say the symptoms go away but I still get the achy feeling in my legs that I remember having when I had HSP and I have had this all my life. I am just wondering if anyone has had any lingering symptoms with their HSP. Thank you.

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Comment from: Faith, 65-74 Female (Patient) Published: May 19

I was diagnosed with Henoch-Schonlein purpura (HSP) in 1959 at age nine. Symptoms were rash on lower body, severe abdominal pain, and bleeding from the rectum. I lost weight and developed swollen legs. After being hospitalized for 6 months I went home to finish recuperating. Since then I have had recurring attacks, at age 13, 45 and now 65. I also developed psoriasis at age 25 after birth of first child and suffer with arthritis. I had to have a hemi-colectomy of the sigmoid colon. At onset no medical doctors knew what to do and I had many specialists taking blood and doing tests. I had 3 injections a day for 3 months to stop bleeding. Thank goodness I had a great general physician who had an interest in hematology and never gave up!

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Comment from: Moraviangal, 45-54 Female (Patient) Published: March 28

I was diagnosed with HSP (Henoch-Schonlein purpura) in the fall of 2007, although it took a month for the army doctor to figure it out. My rash started on the left foot near a raised pink spot on my foot, which I am pretty sure was a spider bite I got in a hotel room in Poland. It spread from the left leg upward and then to both legs and finally over three fourths of my body. It became difficult to walk and I ended up with a cane for a few weeks, not to mention terrible aching and low grade fevers. I was put on steroids and it eventually cleared up. My eyesight in my left eye has degraded and so has my hearing somewhat, but I have not had a recurrence. This happened when I was 44 years old and I had an earlier history of psoriasis but nothing unusual, other than lacking a spleen.

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Comment from: view from above, 55-64 Male (Patient) Published: March 02

I developed rash that started from the trunk area to slowly spread to lower legs about 2 years. No doctor could tell if this was adult IgA vasculitis, Henoch-Schonlein purpura (HSP). They all kept on saying all my lab tests, CBC, urinalysis, creatinine and GFR, AST, ALT, and especially the inflammatory test of ESR, CRP were all normal. Lately I have also developed swelling of joints, and stabbing pain in joints (knees and fingers) plus wrists. Sometimes elbows, pelvis and shoulders hurt. There is stomach cramping and mild diarrhea with nausea sometimes. The doctors tell me it is irritable bowel syndrome (IBS) and osteoarthritis. It seems none of the doctors I have been to, is experienced with HSP, or they know what I have but do not want to admit. No treatment is given so far, except told to pop in Advil, naproxen or ibuprofen for pain in joints.

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