Patient Comments: Henoch-Schonlein Purpura - Symptoms

What were the symptoms of your Henoch-Schonlein purpura?

Comment from: SeattleJoe, 45-54 Male (Patient) Published: April 19

I am 47 and got Henoch-Schonlein purpura out of the blue. It started with pain and stiffness in my knees and ankles. A couple days later these weird rashes started showing up on my feet. The rashes spread up my leg over the next few days, and they my stomach started cramping. The symptoms grew more and more severe over the next few weeks so that I could hardly walk, and the stomach pain was at 7 or 8 out of 10. It took my doctors about a week or two to figure out what was wrong and start me on a low dose of steroids, about 20 mg. It was too little and too late for me however because it got into my intestines and I started bleeding in my intestines. I was admitted to the hospital where they gave me a high dose of steroids 70 mg, until the bleeding stopped. Over the next two months they lowered the dose down to nothing. Four months later I'm off the steroids, the rashes and stomach pain are long gone. I still have a lot of pain in my knees and ankles though. I feel sorry for anybody who gets this. Such a weird and painful illness. My heart goes out to you!

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Comment from: SickyNicky, 13-18 Female (Patient) Published: January 09

I used a body hair remover that had no directions on wearing gloves so I didn't. I noticed that at the end of my application there seemed gunk stuck to my nails and I couldn't get them clean. So I used my nails to get that off. I realized my nails had melted by the product and now were paper thin. My stomach got the brunt of the abuse. I applied this stuff to my arms and legs and had gotten some on my stomach. It started burning and now it is bright red and oozing green matter. My legs started bleeding in places I had a healed cut.

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Comment from: polly, 13-18 Female (Caregiver) Published: November 08

My depression is more sadness than I can handle, it's because of my grandchildren. I cry each every day, I go nowhere, I don't live I exist, I don't care if I live or die, if I could find a way out I will do it. It's always on my mind of ways to leave this awful world. I'm on no medicine, because instead of them giving me something that will work they ask. I don't have a real doctor, I don't have a mental doctor, and I have ADHD. I have had no medications for that for a real long time. I was on at one time but moved out of state for short while. So I struggled every day, no sleep, lots of dreams, and sadness; my heart feels like someone stabbed me. I have lost interest in everything. I go nowhere, do nothing, and no friends except one who lives an hour away. All I want is to die, and soon. Because I hate my life and myself.

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Comment from: vampiregirl7788, 13-18 Female (Caregiver) Published: April 05

My mom who is 35 years old now, was diagnosed with Henoch-Schonlein purpura (HSP) at the age of 9. She has told me so much about it, but I was still wanting more knowledge. That's why I am doing more research on the topic. She's been amazing. She fought through the disease like the woman I look up to today. I love her, and so glad she inspired me. She told me about the rash, and all the symptoms she had to deal with. She told me that she had to deal with weakness, and fever. The doctors kept telling her it was the flu, but nope. They confused it with Rocky Mountain spotted fever and meningococcal disease. I am kind of a science geek, so I went deeper in the disease and found amazing facts. Penicillin, amoxicillin, and ampicillin, which she is allergic to, could've caused the disease to blossom in her young body. I hope all of you guys who know people, or yourselves, have experienced HSP, I hope you live a long and happy life. I love you all.

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Comment from: lola, 25-34 Female Published: January 06

My doctor gave me 4 weeks of antibiotics and soaking, but my paronychia didn't get better. So then he tried 2 weeks of bacterial medications, which didn't work and also gave me a rash. Then he referred me to a hand doctor, who gave me antifungal medications topical and oral, 3 weeks on this and it is slowly getting better. Half my nail fell off with more that looks like it will, but it doesn't hurt like it did. I have 3 weeks of medicines left then hopefully it will be all cleared up, except for no nail. I advise anyone not to wait to see doctor over what seems to be superficial.

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