Patient Comments: Henoch-Schonlein Purpura - Symptoms

Question:

What were the symptoms of your Henoch-Schonlein purpura? Submit Your Comment

Comment from: Kate, 7-12 Female (Caregiver) Published: January 29

My daughter has Henoch-Schonlein purpura nephritis. It started out as the purpura rash, joint pain so severe she could not walk, and renal involvement. My sweet 11 year is on lisinopril to protect her kidney. She has had kidney biopsy which confirmed HSP and fortunately did not reveal any glomerular crescents as this would have severe complications. She suffers from significant headaches day in and day out. MRI did not reveal any evidence of vasculitis in the brain. I wonder if anyone else had headaches.

Comment from: Nayeem, 7-12 Female (Caregiver) Published: July 06

My child is 9 years old and she has Henoch-Schonlein purpura. She is suffering from abdominal pain and she has got rashes.

Comment from: Sherry, 7-12 Female (Caregiver) Published: May 29

My daughter (age 10) has had the Henoch-Schonlein purpura (HSP) for over 2 years now. It is very sad seeing her go through the pain. It hasn't affected her kidneys yet but she does have some joint pain and stomach pain. Her spots have come back and it is getting worse each time.

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!

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.

Comment from: Tracey, 3-6 Female (Caregiver) Published: July 26

I can't stop throwing up because of diabetic ketoacidosis. I have not had anything to eat or drink much in 3 days, I have big infection.

Comment from: Mark, 3-6 Female (Caregiver) Published: June 14

I got a twisted forefinger and it is very painful after 3 months.

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.

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.

SLIDESHOW

Arthritis: Causes and Treatment for Joint Stiffness and Pain See Slideshow
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.

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.

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.

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.

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.

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.

Comment from: Dee, 35-44 Female (Patient) Published: February 04

I was diagnosed with Henoch-Schonlein purpura when I was 5 an am now in my 40s. We didn't have Google back then to research purpura like we do now, but I remember growing up, my parents made sure it was part of my health history. I had a severe case and my parents almost lost me. I lost a ton of weight and remember not being able to stand and nurses trying to get me to stand on a scale in the hospital. I remember ice baths for a high 105 temperature. The rash had spread from the tips of my toes to the roof of my mouth and the doctors had told my parents that if it went to my eyes I could go blind and to hope that it didn't go to my brain. Miraculously I recovered and have had no recurrences fortunately.

QUESTION

The term arthritis refers to stiffness in the joints. See Answer
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.

Comment from: Tyu987, 7-12 Male (Caregiver) Published: July 22

My son developed Henoch-Schonlein purpura with no known trigger. He developed the classic rash and arthritis. Although terribly frightening as a parent, he was fine. He never had any kidney involvement and had no reoccurrence.

Comment from: Mandy, 13-18 Female (Caregiver) Published: April 16

My son was 14 years old when he got Henoch-Schonlein purpura (HSP) and admitted into hospital, where the doctors didn"t have a clue to his condition. After treating him with the wrong antibiotics for 2 weeks they transferred him to another hospital. HPS had caused vasculitis, which had inflamed his kidneys, and his kidneys deteriorated. At 18 years of age he was put on kidney dialysis, then in September 2008 he had to undergo a kidney transplant, now in 2014 my son is 24 and is doing great. It just makes me still feel very angry that if he had been diagnosed and treated correctly he would never have had to suffer all the pain he went through.

Comment from: Samia, 3-6 Female (Caregiver) Published: April 11

My 6 1/2 year old 2nd daughter has been suffering with Henoch-Schonlein purpura (HSP) for over 4 years now she is one of the rare cases who has it long term. She"s had all sorts of tests done, 2 skin biopsies and is on medication for arthritis. She has monthly blood test is been seen by specialist doctors on a regular basis but there doesn"t seem to be a cure for it .At the moment I am very frustrated because it affects her everyday life a lot and there"s never any information on anyone who"s had it long term. Would appreciate if anyone has had a similar experience would be able to write about it.

Comment from: BARB, 65-74 Female (Patient) Published: October 08

I was told in 2010 that I have Henoch-Schonlein purpura. On both feet, scabs came on each lesion, when one fell off the next one would happen. Now the scars are there to remind me. My feet are tender and I keep them elevated all the time with a fan 24-7, my toes are numb. I take Gabapentin 3 times a day because they burn. I only leave my house for doctor appointments and I know my feet will hurt and burn for 1-2 days with little relief no matter what I do because I had them down for my office visits. I have learned to live with this.

Comment from: telshyrose, 3-6 Male (Caregiver) Published: March 29

My son was a month away from turning 3 when he got a stomachache. Within two days, he started hurting and not wanting to be moved or touched. That night, his skin started turning a light purple and he developed red spots on his body. We took him to the ER and he was diagnosed with HSP. It took about two weeks before he was better. Six months later, it came back, and he was ill for another three weeks. Another six months after the second episode, it returned. I feared the HSP would permanently damage his kidneys. Luckily, he didn't have any lasting damage. It has been four years now and we have been very lucky that he has not had another outbreak.

Comment from: 0-2 Male (Caregiver) Published: November 27

My son had Henoch-Schonlein purpura just before his third birthday. It started with a rash and vomiting, we were told initially that it could be meningitis and he was treated for that. It took a couple of days to get a correct diagnosis. He was quite ill with diarrhea and vomiting and arthritis in his knees. He had trouble walking. The rash got considerably worse over the next week, he had to be hospitalized three times. His scrotum swelled up, that was the cause of one hospitalization. It was a very stressful time. Eventually his symptoms diminished on their own. He was followed up for over a year. He is now 10 and has had no further problems. Every time he has a tummy ache I worry about a recurrence.

Comment from: uh, 25-34 Male (Patient) Published: June 01

I'm 29 and have been battling HSP now for 2 months. I've been to 5 different hospitals now. This sucks! I'm ex-military and believe it might have to do with exposure to depleted uranium found in reactive armor. They have me on 60mg of prednisone a day along with 2 heavy pain killers. I have gained ample amount of weight and cannot workout in fear of a out break. I literally hate my life now! Can't work or even be active with my son.

Comment from: john, 55-64 Male (Patient) Published: February 13

I am 55 years old and spent the Christmas Holidays with what turned out to be H.S.P. Apparently it has no age limit!. It started with a rash on my legs, and spread to 75% of my body with pain and swelling in my ankles, legs, and knees. After 3 days of hospitalization, numerous tests and visits by specialists, it was determined to be H.S.P. and the only treatment was antihistamine and pain relief. It cleared up within 2 weeks, and now 3 weeks later it has reoccurred, so I will be taking antihistamines and otc pain meds to save the $25000 it cost me (since I have no insurance) for the hospital costs.

Comment from: Mummy, 3-6 Female (Caregiver) Published: January 10

My three year old was diagnosed the HSP 10 weeks ago and all of the symptoms are still present. She currently has the rash all over her legs (this has never left her), has had continuous problems walking, standing and sitting, her hands are currently so swollen she cannot pick up her cutlery or crayons. Two weeks ago she could not open her right eye as it was so swollen, she has had intermittent tummy ache and she now has black stools. I was told these symptoms would last for 6 - 8 weeks but they are showing no signs of going. My concerns are the amount of ibuprofen she is having to control the pain and the swelling. I just hope this has no long-term effects on her health.

Comment from: Gavinsmom05, 35-44 Female (Caregiver) Published: November 16

My son is 6 years old. He came home from school with both his ankles swollen and red dots all over both legs. We thought he had been bitten and was having an allergic reaction. The next day his wrists started swelling and the rash of red dots had spread. He was having difficulty walking. We immediately went to the pediatrician and they diagnosed him with HSP. His penis, ears, ankles, wrists, knees, and fingers swelled up. He has had hard knots on his scalp, groin, and calves. He has the huge red spots all over his legs and buttocks. We are on day 6 and he has had a second wave of rash which now looks like raised bug bites. I can only pray that this will be over soon!

Comment from: jackson, Male Published: October 26

My case of Henoch-Schonlein purpura (HSP) was more serious than what was described. I have had it for seven years, and I am now 14. I had to have a couple of operations and take steroids and another drug for six years. The side effects made things difficult for me. I let out lots of protein and saw a specialist. The doctor said that it is as if there is a hole in my kidneys, and all of my protein is leaving my body. Sometimes I saw blood when I urinated! (I'm male.) It was very stressful, and I am going for another check-up in six months. Wish me luck!

Comment from: Mum, 3-6 Female (Caregiver) Published: September 15

My daughter had this disorder when she was 6 years old and I would have to sit behind her in bed and she in a maternity pillow in front of me (her between my legs in a sitting position) and I would have to rub her stomach in a circular motion about every twenty minutes for about 2 or 3 weeks. She slept no longer than about twenty minutes at a time because of the cramps in her stomach.

Comment from: tashac., 13-18 Female (Patient) Published: July 29

I'm 16 and I was diagnosed with HSP at the age of 9. A few weeks before I was diagnosed, I started feeling really stiff and every morning, I couldn't get out of bed. My back was so painful, I could barely move and I would have to struggle and roll off of my bed, to hit the floor. One morning, the morning it was the worst, I could barely move at all, I felt really ill and had severe abdomen pain and I came up in a rash all over. There wasn't anywhere where there wasn't a spot. My mum booked an emergency doctors appointment. There were no available doctors, so we saw a nurse who had no idea what was happening, and had to pull a doctor out of a meeting to get me a second look. They first thought it was meningitis. I was taken to hospital and spent the day there. At the hospital, I had loads of blood tests, urine tests, and many others. It was horrible as I had no idea what was happening to me and no one was telling me anything - it was only years later that my parents explained so I understood. It took weeks for me to actually be diagnosed and meantime they gave me a really gross medicine, but once they had found out it was HSP, I had to go onto another medicine which wasn't as bad! I still get stiff now but I'm ok.

Comment from: HSPMom, 25-34 Female (Caregiver) Published: May 13

Our daughter was first afflicted with HSP at age 6. She had bloody stools, vomiting and abdominal pain along with headaches and joint pain. The rash showed up after the first symptoms. We nearly lost her when the seizures started. She was treated with steroids and anti-convulsants and at one point stopped breathing. She was on steroids for months and had to have a home teacher for her first grade year. We thought that it was all over and she was generally healthy for about a decade. Then it gradually became clear that her immune system does not function correctly and that her immunoglobulin is not as it should be. She suffered with constant infections and took tons of antibiotics but problems always recurred. She is now on monthly IVIG treatments that sort of keep the infections at bay.

Comment from: couge, 3-6 Male (Caregiver) Published: March 08

My son (4 years) was diagnosed with Hsp at the start of this year, it started with a sore swollen wrist then ankle and then his legs got covered in spots all within about 10 minutes of each other. I also have a daughter who has ITP, so wasn't going to muck around with it, I took him into the doctor who told me what he had. He then took blood tests and urine samples which showed protein in his urine. Since then I have been in and out of hospital 4 times in 2 months, waiting for some answers, Still waiting, he is booked in on Friday for a kidney biopsy so hopefully we'll get some then. He also was peeing bright red as if it was straight blood, and continued to get more and more spots, his genitals also swelled and went very purple (not sore), but very scary, these days when he gets home from school and all he can do is sit on a chair and watch tv, he's to sore to move.

Comment from: Jules42, 35-44 Female (Patient) Published: March 08

I am a 43 year old female who has recently been diagnosed with HSP. It started with a general feeling of being unwell with a sore throat. Approx 5 small spots appeared on my lower legs and by the end of the day I was covered to my waist in a rash. I also had extreme pain in my knee joint and swollen hand. After 3 days the rash increased with very large lumps also appearing at top of my legs and waist the joint pain moved to my feet also and I was unable to walk. I was admitted to hospital where I had many blood and urine tests a skin biopsy, chest x-rays etc. I have blood and protein in my water still 6 weeks later and have recently had a kidney scan with talk of doing a kidney biopsy. I am still feeling unwell, extremely tired, still have rash although it has faded and looks like bruising. I continue to have pain in my joints and kidneys. Under specialists for rheumatology, dermatology and renal. If I can help anyone to share experiences.

Comment from: CS5, 7-12 Female (Caregiver) Published: January 19

My daughter was 8 years old when she first got the symptoms of Henoch-Schonlein purpura. She was very weak for a couple of days, and then she got a rash on the lower part of her body. The rash lasted for about a week, and then she started to swell up on her ankles and knees. She was in a lot of pain also from her stomach ache. My daughter is now 10 and still has the symptoms from the HSP. She gets the joint pain and constant tummy pain. She is on Prevacid daily to help, but it only helps a little bit.

Comment from: Charlie, 35-44 Male (Caregiver) Published: March 10

My dad was diagnosed with Henoch-Schonlein purpura (HSP) around 1970. According to the doctors it was HSP with kidney involvement, which at the time they indicated was extremely rare. I do know that he died within a couple of years, he was 42 when he died. I was surprised to see so many folks having experience with or having HSP, I guess it is not so rare anymore. Good luck to you all.

Comment from: sam, 3-6 Female (Caregiver) Published: November 18

My daughter is 6 years old and has been suffering from HSP (Henoch-Schonlein purpura) for the past 4 years. She has rheumatoid arthritis and is on medication for it. I wonder if anybody else has had it for so long as it is very rare to have it long term. I am getting to point where I feel I can't cope anymore.

Comment from: Kaylin, 13-18 Female (Patient) Published: August 01

I am 18 years old. I was diagnosed with hsp when I was 4 1/2, I had two outbreaks and after a very long and painful month the doctors finally told my mom and I the news. I never made a full recovery and my hsp has lead to multiple medical issues. I can not longer stand for more then 20 minutes at a time with out my legs and feet swelling, I had to have my gallbladder removed at 14, I have a bladder condition that has to be treated with medicine that makes my hair fall out, my intestines continuously bleed, when I scrape myself it scars over then immediately scars. My hsp has gotten worse as I have gotten older, few doctors have actually studied hsp so most doctors think I'm lying. My legs are always swollen my back continuously hurts, even sitting the wrong way for a short amount of time takes its tole. I get sick all the time even after taking medicine, cold or humid weather of any kind kills me. Doctors won't prescribe me any kind of pain medicine because they don't know what hsp is. Mine and my moms life revolves around keeping my pain at a level where I can stand it, just this morning I Was to swollen and in to much pain to get out of bed to use the restroom, (I had to be carried) this disease has forever changed my life in the most horrible way.

Comment from: jackiec43, 45-54 Female (Patient) Published: April 22

I was diagnosed with HSP in 2007 and had a very mild dose of the illness. In 2010 I started with HSP and ended up with ulcers on my legs. Since April 2010 there hasn't been a full a week that I have gone without having the rash. Some weeks are worse than others. I am totally drained – I suffer daily from joint pain in my arms, fingers, legs, and feet. I have been in hospital several times with a high blood count and blood in my urine. I take medication daily, including painkillers and steroids. It is so hard, because people don't understand how this makes you feel.

Published: March 08

My 4 year old was just diagnosed with HSP at first doctor thought it was impetigo but once it spread from butt to legs and couldn't walk because of the severe ankle and knee pain. I took him to emergency room and found out it was HSP. I am told there is nothing we can do for him and that we have to let this run its course.

Published: January 03

My daughter was diagnosed recently with Henoch-Schonlein purpura. She vomits for days at a time, gets a purple dot rash on her arms and from her waist right down to her toes. Her ankles and knees swell up to 3 times their size and she cannot walk. She also has abdominal pains that lasts for days. It has been 5 weeks since this started.

Comment from: Kansas City mom, 3-6 Male (Caregiver) Published: January 03

My 5 year old was just recently diagnosed with Henoch-Schonlein purpura. We think his 15 month old brother might have it too. Three of my four kids were also just diagnosed with strep, including these two. The 5 year old cannot walk on his own, his left leg bothers him the most. He has abdominal pain much of the time (and a swollen abdomen and hips). Although he occasionally feels well enough to eat. I was advised to give something like protein shakes or pedia-sure if he won't eat, since at least that will put some nutrition in him. I am eager to see if the antibiotic and the codeine they prescribed for my 5 year old will help him recover from the Henoch-Schonlein purpura. We are two weeks into the Henoch-Schonlein purpura from the start of the symptoms, which were vomiting and high fever. Day four of the symptoms was when the pain and rash showed up. Two days later he started on prednisone, and by the end of that fifth day of treatment his purpura was nearly gone, but the pain has only gotten worse. The 15 month old is only three days into his symptoms, and the rash showed up yesterday for him, so we will see what happens with him. The strep will keep them from healing, so we are glad to have it diagnosed and being treated. This is definitely a scary time, and hard to see my children in so much pain. I sympathize with all of you who have gone through, 0are going through or will go through the same thing.

Comment from: macca, 3-6 Female (Caregiver) Published: November 13

My daughter was diagnosed with Henoch-Schonlein purpura in July, I have been advised she has one of the worst cases seen, her rashes have been so severe at times, she still has bruising and protein leaking from the kidney 4 months on. I was told this would last 6 weeks. She also still suffers with joint pain. This has been an awful time for us.

Comment from: sapper_wife, 7-12 Male (Caregiver) Published: October 16

My son is 10 years old. He is currently suffering from Henoch-Schonlein purpura (HSP). It started about 4 weeks ago. He developed a very small rash of bumps on his shins. I thought he had been bitten by fire ants. Within 3 days, the bumps began to spread, and his right foot swelled up twice the size of his left. By the next day, he was vomiting profusely and in intense abdominal pain. The rash was literally spreading while I watched. I rushed him to the ER as a result of the abdominal pain. While in the hospital, the rash started to get better when they put him on steroids, but he was still vomiting(even with IV Phenergan and Zofran) blood and having bloody diarrhea, as well as pain so bad that even while on a morphine pump, it could not be controlled. He also had blood in his urine and was extremely dehydration. After the pain in his stomach subsided, 9 days later, he was sent home on prednisolone, Pepcid and oxycodone. The very next day, the rash came back with a vengeance, it was EVERYWHERE. He also developed intense joint pain to the point that he could no longer walk or stand up. He is now going on 4 weeks of this disease, the rash is still very prevalent, but the abdominal pain and joint pain seems to have gotten slightly better.

Comment from: SharingConcern, 7-12 Male (Caregiver) Published: September 26

My 9 year old son developed HSP, it started with a rash on the back of his knee. It quickly spread to his the rest of his leg, by the time I rushed him to ER which was 30 minutes away he could not walk. That evening they took blood tests and diagnosed him, prescribed prednisone and ibuprofen. Seemed like he was on the mend, but 24 hours later he woke and the HSP had spread to his colon. He spent a week in the hospital where they treated him for the pain and took daily urine samples to insure it had not spread to his kidneys. He is going home today with prescriptions and appointments for follow up. I worry about every rash that appears on his skin, but now I know what to look for.

Comment from: Robin's Momma, 7-12 Female (Caregiver) Published: August 27

My daughter was diagnosed in October 2011. She was originally diagnosed as having an allergic reaction to amoxicillin and told to take anti-histamines to deal with the rash. In February 2012 she was diagnosed with HSP caused by kidney disease and was put on steroids. This has caused huge weight gain, and severe stretch marks. The steroids have also caused a huge moon face. Are there any other pre-teens out there with this, and if so how are they coping through with this horrible disease?

Comment from: MomOfThree, 13-18 Male (Caregiver) Published: August 13

My 14-year-old son has been sick for two months and was finally diagnosed with Henoch-Schonlein purpura. His first symptoms were a general feeling of malaise but then his stomach started hurting. He lost his appetite and though he was hungry, at times he was hardly able to eat. By the second week in July, he started with the rash. We initially thought a cat scratch had gotten infected but his pediatrician immediately diagnosed the 'rash' as blood pools under his skin (vasculitis) but wasn't sure what was causing this so ordered a ton of blood work. Over the weekend his 'rash' was worse and he was feeling worse so we went to the Children's hospital where they immediately diagnosed him with HSP. It's been almost a month now and he still does not have all his strength back. He has bouts of bloody stools and protein is present in his urine but so far, no blood in the urine although we have been cautioned to be on the lookout for it. We did have a second trip to the ER after the first experience with blood in the stools but they reassured us as long as it was not in his urine he was okay. After almost a month we are seeing feet/ankle swelling and he bruises easily. His stomach has stopped hurting, thankfully, but all he can do and feels like doing is resting. We were told at the hospital this could take up to 8 weeks to pass and that it can recur. They also said if the blood starts showing in his urine he would be put on long term steroids but they are trying to prevent that as patients who are placed on the steroids have a risk of greater reoccurrence. I hope this helps someone else. This is the craziest thing we have ever heard of and until now never even knew what this disease existed. I wish you all a speedy recovery!

Comment from: kat, 3-6 Male (Caregiver) Published: July 12

My son had Henoch-Schonlein purpura when he was 6 years old. His symptoms included a rash just like the rash for meningitis, swelling of the hands, legs, head, genitals -- all on different days. There is no treatment and he had lots of bed rest. I had to check his urine daily for protein and if it went high I had to take him into the hospital. All in all he was ill for 5 months. He is now 21 and has not suffered since.

Comment from: Frustrated, 55-64 Male (Patient) Published: January 06

I am 59 years old male - I got HSP three months ago. First I noticed bright red spots on my thighs. The next day my left ankle got sore and swollen. After that came stomach aches and diarrhea. After three days I noticed that there was blood in excrements - then I was sent to hospital. I was given antibiotics directly into a vein and some pain killers because doctors told me, that my small intestine was inflamed.

Comment from: Leepa, 7-12 Male (Caregiver) Published: June 09

My son is seven and he was diagnosed with Henoch-Schonlein purpura today. He had a cold last week that is still clearing up. He has had a stomach rash for three days, red, raised and pinprick sized. Diarrhea and stomach pain this morning. No significant fever, no headache, no swellings. Pediatrician diagnosed this straight away -- he saw another case earlier in the week! All blood tests are normal. We're home, all good, just keeping an eye on him and my fingers crossed.

Comment from: hrobinson, 7-12 Female (Patient) Published: March 21

I had Henoch-Schonlein purpura when I was younger. It caused swelling a lot of pain from my waist below. Luckily the Doctors who had seen me put me on some type of medicine to stop what was happenening to me. My legs and bottom had looked like they had just had a rash at first and it began at my feet then progressed up to my hips the swelling and pain came later on. I was too young to remember the names of the medicines that they had put me on but whatever it was kept from dying. If they hadnt done anything at the time that they did the Dr's said it would have exploded my heart. I'm thankful for what they did for me and that I'm perfectly healthy today and am now an expectant mother.

Comment from: Markik, Male (Caregiver) Published: March 08

So I was at a wedding party with my family and one if my cousin's leg started hurting. When we were about to leave her she vomited on the floor and said it really hurt bad. My uncle was going to drive her to the hospital because we were in Rochester and her legs got swollen. My uncle and aunt were thinking she got something contagious from the waterpark they went to a week before hand. Later they realized my cousin has HSP and I got scared cause if that gets into your kidneys you may need surgery (since she was very young that would be sad). The next day we found out instead of relaxing in the hotel, sadly she was in the ER feeling good which was good news. Just too bad we didn't get to say goodbye to her when we left. Hopefully she will get better.

Comment from: Amy, 3-6 Female (Caregiver) Published: July 24

You never want to go through Henoch-Schonlein purpura, but if you do, be prepared. And if you see things that are not normal, you're not crazy! I had to experience this nightmare. Today my daughter is doing great. But when she was little she lost so much weight and nearly died from weight loss. You get an endocrinology doctor, we did and he was the best. Referred us to Children Hospital and we had to go there weekly.

Comment from: henspeaking, 35-44 Male (Caregiver) Published: July 24

My husband was diagnosed with Henoch-Schonlein purpura (HSP) about a month ago. It began in his ankles and the rash broke out. He has arthritis and diabetes. He is 43 years old and is in some terrible pain. He was hospitalized for three days and came home with medications such as pain relievers, naproxen, stomach and Benadryl. His lesions were healing up and then the outbreak came again. The steroids they gave him in the hospital made his sugar go sky high and now he is on insulin. His legs look really bad and now they have an odor to them. I have been trying to do some research and to no avail. I have taken pictures to document this ongoing study. We have no idea of what to do or where to go next. Funds are limited.

Comment from: michelle, 13-18 Female (Caregiver) Published: April 19

My daughter is 15 and was recently diagnosed with Henoch-Schonlein purpura. It started out as a rash on her legs and swollen legs. She's going through her exams at the moment, and she has now got swollen elbows and her wrists are swollen. She's in bed and cannot move. She's in so much pain and cannot move. She cries all the time. It started out from a cough. I guess it's in its early stages…

Comment from: Lucy, 45-54 Female (Patient) Published: January 11

I was six when I got HSP. I didn't have a rash but had blood in my urine and my ankles swelled. The pain in my stomach was constant and I have to say I have not experienced anything as bad since, even childbirth! I ended up in hospital as did two of my classmates, whose kidneys were affected. School didn't know how we had all got HSP at the same time. Once I was given the correct medicine I felt better immediately.

Comment from: cclaiborne, 0-2 Female (Caregiver) Published: July 12

When my son was 2 years old his knee was huge swollen and he had these red dots all over his arms, legs, and abdomen. We took him to the ER and they ran x-rays and could not find anything so they sent us home. A couple days later the rash got worse and he got a lump on his back spine as well as his knee. The ER put a full length cast on his leg because they could not figure out what was wrong with him. Several days later his other knee swelled up so we rushed him to the ER. While in ER they went to take a urinalysis and his scrotum was bright purple and the size of a grapefruit. They admitted him and ran test after test after test. They had no clue what was wrong with him. They finally sent him to a doctor in UCLA and that doctor diagnosed him with HSP within five minutes. We opted out of doing the steroid treatment and his symptoms lasted him around 2 months. Things that would swell up was his knees, his scrotum, his elbows, his spine and the side of his head with the red dots all over his body. He was unable to walk when his knees and scrotum were swollen. He is now almost 16 years old and is as healthy as can be.

Comment from: debra_denton, 7-12 Female (Caregiver) Published: July 08

My son had HSP 20 years ago and it is a very serious disease. We almost lost him several times and he was in the hospital 7 weeks. The only cure is high doses of steriods and hopfully catch it early. My son was first being treated for Rocky Mountain Spotted Fever. If he had of received treatment for HSP right off the bat he might not have gotten so sick.

Published: March 29

My son was diagnosed with Henoch-Schonlein purpura at 4 years old. It started with his ankle swelling. Well I thought he had sprained it or something but then his head swelled up. Took him to the doctor and they said it was an allergic reaction to a bug bite. Well it didn't go away 2 days later so I took him to a hospital and they said he had an ear infection. Two days later his private swelled up to the size of a grapefruit and I had had enough. I took him to the local Childrens Hospital where they diagnosed him with HSP Nephritis. It settled in his kidneys and at one time had to be put on life support! He is now 11 and still on high blood pressure meds and others and sees a nephrology doctor once a month. This was the scariest ever for me!

Comment from: Concernedmom, 7-12 Male (Caregiver) Published: March 17

My son is 7 and was just diagnosed with HSP. He has been sick for a week now. The vomiting stopped after 2 days, but the fevers continue. Sometimes they are very high around 103 to 104. We have kept him on Motrin and Tylenol, but I just fear that we are putting way too much drugs into him. He has finally eaten a solid meal after one week, but I have to force him to eat anything. He would rather stay curled up in bed all day. I just wonder if antibiotics would help and what are the chances of my other kiddos getting this.

Comment from: mayr, 3-6 Male (Caregiver) Published: February 24

My son was 6 when he got Henoch-Schonlein purpura (HSP), it started with his legs paining him. I thought it was just that he hurt his leg running around until I noticed a rash starting to form on his lower leg, I brought him to A&E and while we waited to be seen by a doctor his 2 legs had swollen up so bad that I had to put him in a wheel chair because he could no longer stand. It was then the doctor diagnosed HSP and until then I had never heard of it, it was a very frightening experience for us. He had to spend a few nights in the hospital and it lasted about 4 weeks. He is now 7, nearly 8, and it hasn't returned and hopefully it never will.

Comment from: Maria123, 45-54 (Patient) Published: February 14

It was 40 years ago that I had HSP, it took ages for them to figure out what I had, my fevers were so bad I had to have ice baths quite a few times. I spent most of a year in and out of the hospital. I was on a drip for 13 weeks straight. My doctors tried everything and in the end they had told my parents to be prepared for me to die. One last treatment was tried and I recovered. It is funny when I read about HSP and they say a mild illness that you will recover from quickly and yet I know that I almost died of it.

Comment from: pa, 13-18 Female (Caregiver) Published: February 07

My girlfriend was diagnosed for Henoch-Schonlein purpura and also diagnosed for pneumonia. After having a sore throat and a sort of recurring fever, she was admitted to the hospital for 1 week and took prednisone as her steroids and antibiotics for her pneumonia. She's subjected for kidney biopsy to monitor her kidney. Additionally, her body and face swells and I feel pity for my girlfriend. Now, she's been discharged and advised to rest and manage her diet, her diet is low salt.

Comment from: shopmommy, 3-6 Female (Caregiver) Published: February 03

My Daughter is 4 years old. This started as a "rash" on her butt and thigh area. The next morning she was vomiting and screaming that her tummy hurt. We took her to urgent care they did a strep test and blood work. No fever or and other symptoms they gave her a pill for the vomiting and treated her for strep. That was a Monday by Thursday she was still vomiting and screaming in pain (the now called petechia rash) has spread to her legs, feet, hands and arms. We took her to the hospital she has lost 3lbs and had not had anything to eat in 3days. They gave her IV fluids and said it was strep. After telling us it could be LEUKEMIA. Sent her home. The next Monday she still can't eat still in pain and the "petechia rash" has got worse we take her back to the hospital and they now tell us it is HSP today is Thursday 2/3/11 and she is still vomiting and in pain and the rash looks worse than ever.

Comment from: Mom, Male (Caregiver) Published: January 25

My son has had this and had all the symptoms listed. However, he also has renal failure and is having a kidney transplant very soon. Everything you read says this is rare but not in his case. He got HSP when 9 years old and is now in early 30's, so never quit getting this disease checked out annually.

Comment from: 45-54 Male (Patient) Published: January 25

On my 47th birthday I went to my doctor. I thought I had food poisoning. He gave me antibiotics. That was on Thursday. Sunday I went to the ER with extreme stomach pain. I was there for three days. I was put on a liquid diet for four days. The following Monday I went back to the ER for stomach pain. The ER doctor was the one that diagnosed me with HSP. The specialist that I was seeing had never seen this before. I still get spots regularly but I don't have the pain. Maybe I will grow up and grow out of HSP.

Published: February 29

I had Henoch-Schonlein purpura (HSP) when I was about 8 years old. I had red spots all over my legs and had trouble walking, sitting down, or standing up.

Comment from: misscatlover, 45-54 Female (Patient) Published: February 24

I was 5 years old when I became very sick with stomach and joint pain. My pediatrician diagnosed me with Henoch-Schonlein purpura and treated me with steroids, a blood transfusion, and also removed my appendix. I am now almost 52 years old, and I don't seem to have any long term affects from this blood disease. I lead an active life, travel, and I have four children -- none of which have had this problem to date. It was a very scary time in mine and my parents' life. I hope everyone can have the great results that I have had.

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