Patient Comments: Henoch-Schonlein Purpura - Experience

Please describe your experience with henoch-schonlein purpura.

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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
Comment from: Chis, 7-12 Female (Caregiver) Published: April 08

My son has been diagnosed with Henoch-Schonlein purpura (HSP) from the age of 7. He broke out in rash/bruising. My pediatrician was amazing and knew exactly what is was. It went away after a few days, but seems to rear itself every time his immune system is weak! It has been well over a year and I have seen my pediatrician monthly with urine tests and the specialist twice with blood tests. I am fortunate to say that he has no symptoms other than the rash, although the rash gets worse sporadically. I worry everyday but hope that I trust my doctors enough! They suspect that for my son this HSP will continue for quite some time and it seems to be a memory issue with his antibodies, meaning that his immune system believes this is how it is supposed to work to fight off illness! I'm told that he needs quite a bit of time with no HSP for this to go away. That is unfortunate as my son is 3rd grade and kids get sick way too often. Very little information on non-symptomatic HSP and has lasted so long.

Was this comment helpful?Yes
Comment from: Jen, Female (Patient) Published: December 16

I was 2 years old when I was diagnosed with Henoch-Schonlein purpura (HSP). I was hospitalized because of my young age and the severity of my case. A group of medical students drove 75 miles to observe me, as my case was one of the youngest they'd seen my part of the county. I surprised my mom as a teenager when I told her I remembered my hospitalization. I recalled the nightgown I wore, and a Disney pop-up toy, the hospital gave me. Pluto or Goofy was broken and wouldn't pop up. I recall my 2 year-old-like frustration. My mom does not recall exactly what medications I was given, but I suspect I was treated with steroids. She recalls them asking her to think carefully about the treatment proposed, as there was a chance it would leave me sterile. I have four healthy little boys, so no worries there!

Was this comment helpful?Yes
Comment from: Jan, 55-64 Female (Patient) Published: December 05

I was diagnosed with Henoch-Schonlein purpura (HSP) when I was 14 years old in 1964. My symptoms were a strep throat, a very high temperature of 105.6. I had total renal failure, purpuric rash, I bled into most of my joints, and I had vomiting. I also developed bacterial meningitis, and they had found minute bleeding around the lining of my brain. By the time I was admitted I was unable to breathe on my own or move any of my limbs. At first they thought I had diphtheria or polio till one doctor recognized the symptoms of HSP. I was left with scarring to both kidneys, and massive allergies to many drugs including aspirin, penicillin, and most opiates (as in those used to manage pain). I also developed chronic asthma and osteoarthritis in my hands, knees and elbows. After a second attack when I was 20 in 1970 one kidney stopped working and the other is only functioning at 75 percent. I had frequent kidney infections and then became allergic to any drug with sulphonamides in them. On the up side I am 64 years old, yes I have a lot of side effects left from this disease but none that aren't livable with. Just a case of taking good care of myself. I have run 14 half marathons, skydived, go rock climbing and I walk well over 4 miles a day.

Was this comment helpful?Yes

Patient Comments

Viewers share their comments

Henoch-Schonlein Purpura - Symptoms Question: What were the symptoms of your Henoch-Schonlein purpura?

Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on MedicineNet. The opinions expressed in the comments section are of the author and the author alone. MedicineNet does not endorse any specific product, service or treatment.

Alert If you think you have a medical emergency, call your doctor or 911 immediately.

Report Problems to the Food and Drug Administration

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.