Patient Comments: Henoch-Schonlein Purpura - Experience

Please describe your experience with henoch-schonlein purpura.

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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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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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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