Patient Comments: Henoch-Schonlein Purpura - Experience

Question:

Please describe your experience with Henoch-Schonlein purpura. Submit Your Comment

Comment from: That girl, 7-12 Female (Caregiver) Published: January 24

My daughter is 11. She initially had a cold/flu. Two weeks later small red spots appeared on her ankles and feet. Legs were swollen with joint pain so bad she could not walk for a few hours. In hospital she was extremely dehydrated. They started IV and ran test on her blood and urine to make sure her kidneys were not affected from Henoch-Schonlein purpura. She was sent home the next day. It's been 6 days and she still has loose stools. Tylenol and Motrin keep the cramping away. Her legs get warm at night and more blotches appear. She is drinking plenty of fluids.

Comment from: Chelsea, 13-18 Female (Caregiver) Published: June 18

I really don't know what's wrong with me, I'm 13 years old and I have these small purple patches on my skin. They have been there since April and I am so scared it is Henoch-Schonlein purpura that I don't want to go to the doctor.

Comment from: Peaches3401, 25-34 Female (Patient) Published: March 01

I developed a mysterious illness at age 10 after going out to eat. It started with hives on my feet and a rash. The hives would go away during the day and flare up at night with a fever. During the day I would be extremely itchy. I often times experienced joint pain. I was given steroids and other medications to help try and solve the problems, to no avail. My mom and grandmother took me to the doctor multiple times over the course of a year but nothing would show up in my blood tests. About a year later I finally presented with a rash during the day so my doctor ordered me to get a biopsy done immediately. The biopsy confirmed I had Henoch-Schonlein purpura. The doctor told my mother it was probably caused by untreated strep throat (I had various bouts with strep as a child) and to just keep my stress low and it would go away. I remember, once we found out what it was, not worrying anymore and it did clear up, and I haven't had any symptoms since (knock on wood) except for a little psoriasis and/or eczema on my belly and ankle (mild).

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.

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!

Comment from: grateful girl, 19-24 Female (Patient) Published: August 17

It was the most unforgettable experience in my life since my Henoch-Schonlein purpura happened when I was 17 when I was going to sit for a big examination that meant a lot to me. I began to lose hope at that time because I really thought I could die from the extreme pain that I felt in my legs and arms. I couldn't walk for about 2 months so I had to sit for my exam in the hospital. However I feel very grateful because I've got my family and friends who always give me support.

Comment from: unknown disease, 35-44 Male (Caregiver) Published: December 07

My patient has had a broken ankle a while back playing basketball with his daughter and I checked his vitals but they are normal. He lost his mom to a mystery disease and his dad never talked about it. He lost his dad 20 years ago. He is also suffering weight loss from not eating too well and can't do things he used to do at work, which are now difficult. And now he is having rapid jerky body movements. I wonder if this could be Henoch-Schonlein purpura.

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.

SLIDESHOW

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

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.

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.

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.

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!

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.

QUESTION

The term arthritis refers to stiffness in the joints. See Answer
Comment from: ktk, 35-44 Female (Patient) Published: September 09

I had first signs of Henoch-Schonlein purpura (HSP), rash and upset stomach, at 8. They lasted for about a month and I was never officially diagnosed, although in my medical records the doctor wrote in, possible HSP. At 18, I had flare up that was quite bad, I was sick for two weeks, got the rash on my legs, swollen painful joints, etc. I ended up in the hospital for 10 days. Follow up at home was another few months. At 30, I had another flare up, rash, sore swollen joints (especially in my legs). Today, in my 40s, I woke up with stiff joints and severe flank pain. I'm waiting to hear back from doctor to see if everything is ok.

Comment from: hpalomo, 7-12 Male (Caregiver) Published: May 23

My 12 year old son developed Henoch-Schonlein purpura. He started with a mild rash on his legs, mostly below his knees, and on his buttocks. He also had a sore throat, and just wasn't feeling well. He saw his primary care physician and was diagnosed with purpura. His strep test, blood work, and urine test all came back normal. After 2 weeks the rash was quite significant, almost shocking to look at. He still has a sore throat, and just doesn't feel well. Thanks to your website I have knowledge of this auto-immune disease, and know what to expect. I still am taking him to the doctor today to have a checkup.

Comment from: AmyCB, 35-44 Female (Patient) Published: March 13

I was diagnosed with Henoch-Schonlein purpura when I was about 15. I got the rash all over the lower half of my body. I went to doctor after doctor before I was diagnosed. I am now 42 and about 2 years ago I was diagnosed with kidney disease. I continued to have a large amount of protein and blood in my urine and the doctor I worked with continued to encourage me to have a 24 hour urine done. I finally have done it and my 24 hour urine was 1750 and it should have been less than 150. I went and saw a nephrologist and was started on medication to protect my kidneys. I will be on that for the rest of my life. I have had 2 children and always had a large amount of protein and urine noted in my blood and it was never checked. I am thankful that I am more than likely at my baseline with my kidney disease and so thankful that someone stayed after me to get testing done.

Comment from: kristi1980, 7-12 Male (Caregiver) Published: December 16

My son is 9 years old, he was diagnosed with HSP (Henoch-Schonlein purpura) when he was 6. The children's hospital had said that my son had one of the worst cases they had even seen. The only thing that helped his stomach pain was morphine. This all started with a swollen ankle; the very next day the rashes appeared, then the severe abdominal pain. We were in and out of hospital for a month and was told when the rashes went away he would more than likely never get it again. Wrong! This has affected his kidneys. The very next year he was hospitalized again because a sinus infection started the disease up. He is 9 now and we are still battling through it. He can't get rid of any infection that he gets and I'm trying to find a cure for this baby. It's not fair to him and I would love to find a doctor that can help, so my next step is going to the blood doctor and try some new medication they have now.

Comment from: Bob, 55-64 Male (Patient) Published: April 21

I was approximately 8 years when I contracted Henoch-Schonlein purpura, I was seen and diagnosed in 1959. I experienced severe stomachaches, rashes, and joint pain. I also had a loss of appetite. Thank goodness for codeine. I recovered after about 6 weeks. No ill effects since.

Comment from: Talei, 13-18 Female (Caregiver) Published: October 29

Henoch-Schonlein purpura (HSP) is awful and I reckon it is about 2 years that my daughter will have had HSP! She got it at 11 and is now 13, and protein is high and the rash is just as bad as the first day she got it.

Comment from: sandra, 3-6 Female (Caregiver) Published: November 06

I am a mother of a 5 year old girl who on the 2nd October 2013 was diagnosed with this nasty horrible HSP (Henoch-Schonlein purpura). I cannot write into words how upset I am seeing my daughter roll around and cry in agony with stomach pains. The rash hasn't bothered her at all, just these nasty stomach cramps. She is losing protein and blood in her urine, she has lost loads of weight and keeps asking me how much longer she is going to feel like this. I wish I had an answer for her. she has had so many blood tests, been in hospital a week with high blood pressure and on a drip; she still has high blood pressure and stomach pains to this day 2nd November. I keep upsetting myself as I want her back to her normal self.

Comment from: Christian, 19-24 Male (Patient) Published: October 31

I was diagnosed with this when I was young, about 10 years old or so. I am now 23 and anytime I have a cold or virus I seem to get the very mild rash, not bumps just purple "spots" as my wife calls it on my feet and legs. I have been encouraged to have my blood drawn occasionally to check my kidneys. There is no apparent damage, I'm just wondering what others do.

Comment from: GG, 3-6 Female (Caregiver) Published: May 17

My granddaughter is entering her 10th week of this terrible affliction called henoch-schonlein purpura. She is 6 years old and has constant stomachaches. Each time she has one good day, the cycle starts again. She has swollen and painful joints, severe stomach pain, and then a rash, which gets larger and covers more and more of her body, even on her face, ears, and in her mouth. There seems to be no end to her pain. The doctors do nothing for her and just suggest waiting it out. I give her Tylenol and Motrin for pain, but worry about even that damaging her stomach. I feel so helpless. She can't eat, and lost 8 pounds the first month. We took her into emergency twice, and the second time, the doctor didn't seem to know what to do and sent us home. When the rash gets so large, I worry about possible internal bleeding. Has anyone found a method of relief for this monster?

Comment from: Boulder Mom, 7-12 Male (Caregiver) Published: September 25

My son was diagnosed with henoch-schonlein purpura (HSP) when he was five. He woke up one morning and told me his ankle was hurting and that he couldn't walk. There was a tiny pinkish spot in the ankle area. I asked him to recall what he had done the day before thinking that somehow it was just sore from some activity. He said he jumped out of a tree and may have bumped it. I carried him to Urgent Care to get a foot x-ray. As it turned out, there were no broken foot bones. As we waited, the small spot grew from a dime size to a quarter size. The doctor then ran a series of blood tests which came back showing that there was some type of non-specific inflammation in my son's body. He suspected that my son was having an arthritic reaction to the cold and stomach virus he had had the week before. He let us go home but called the Children's ER and informed them that we might show up if things worsened. Between 6 p.m. and 10 p.m., the rash worsened. The red dots had grown together and were all over his ankles. His feet were swollen and very itchy. It was like the blood began to pool under his skin. He still couldn't walk. He also had areas with red dots on his torso, thighs, arms, and scalp. Basically all of his joints were aching and he had a horrible headache. Well, at about 10 p.m. I was picking him up and he screamed out in pain. I raised his shirt to find that his back was swollen the length of his spine. I literally freaked out and rushed him to the ER. By midnight, the ER docs diagnosed him with HSP. I think the Urgent Care doc would have diagnosed the HSP had the rash been more prominent earlier. My son stayed the night at the hospital. He couldn't walk for almost 2 weeks. He had to do weekly and then monthly urine tests to monitor whether the HSP was in his kidneys, but nothing ever showed up. He never had to take the Prednisone, just ibuprofen. My son is now 8 and I can still remember almost every detail of that frightening day. He has not had HSP again but every cold he gets worries me and I can assure you that I try to make sure he is always well rested (at least 10 hours of sleep a night) so that his immune system can better fight off viruses.

Comment from: nm190, 19-24 Female (Patient) Published: September 25

I'm 20 years old. when I was 17, I was diagnosed with henoch-schonlein purpura (HSP), first I developed a rash all over my legs, followed by a sore throat and my joints and mussels were so stiff and painful I couldn't walk. The hospital took a blood test and sent me home to wait for results. However, the next day I was in so much pain I went to see my local general practitioner who recognized the virus and diagnosed me. He said there was no medication and to rest myself. A week later my stomach was so bad with cramps I had to stay curled up on the couch unable to straighten myself. I couldn't even take a sip of water and I was vomiting. I remained like this for a week until I was admitted to hospital and put on a drip. It turned out I had a low immune system and was unable to fight it myself. Within two days at the hospital I was feeling much better and within a month I was back on track. I'm 20 now, and after a flight home from holiday last week, Icame down with some symptoms. First my legs, arms and back were aching, followed by stomach cramps, a sore throat and finally the rash all over my stomach. I went to my doctor and she prescribed me antibiotics for my throat and tablets for my joints. I'm only on my second day of medication and it is working wonders. It hasn't hit me that bad at all and I should be better by next week. She told me that chances were I would always be prone to HSP because I've had it once. Its just air-born and I cant prevent it. However, this has been a very mild spell!

Comment from: Mommy, 3-6 Male (Caregiver) Published: September 10

My son was diagnosed with HSP at the age of 5. It was in September. It started with pain in his ankles followed by the rash and severe swelling. He had the rash from his waist down and also on his face and head. He was in extreme pain. I had to carry him everywhere because he could not stand on his feet. He also began to vomit blood and was hospitalized. Blood test showed that he had mono in his blood stream but he never showed symptoms of being sick with mono. This is what doctor's say triggered his HSP. After weeks of bruises and pain, it all cleared up. About two weeks later it all started over again. After this cleared, he has not had any more of those symptoms. His doctor did discover that he has a low immune system. The doctor says that he has the immune system of an infant. Today, my son is 7 years old and doing well, but for about a year he was in and out of the hospital and having blood work done weekly. This was the most scary time in mine and my husbands life.

Comment from: Christina P, 13-18 Female (Caregiver) Published: September 10

My daughter is 15. We have been battling HSP for two years. Yes, two years. I cannot even begin to explain the fear the enveloped our lives the first three months of this disease. My daughter had been exposed the strep throat and about two weeks later this began. The spots first showed up as small purple pen point size dots. The spots “exploded” (literally), and have left pock mark scars on her feet and ankles. The swelling was so bad that her feet, ankles and legs were all one size, like a small tree trunk. She was in severe pain and could barely walk. We saw several doctors, for several months, before we were able to find one at our local university who would know what this was and who specializes in this disease. This doctor is not friendly and has a horrible bed side manner. Unfortunately, she is the only one who seems to know anything about this disease and so we are stuck with her. She makes us uncomfortable, which makes it all the worse for us to deal with this disease. Finally, after one year and five months of the onset of this disease, we were able to get a biopsy done of the spots. Very quickly, the results came back as positive for HSP. It took two months for her to heal from the biopsy. For several months, my daughter was on as much as 40 mg of Prednisone a day. She is now on 4 mg a day. She also takes 200 mg a day of the immune suppressing medication, Imuran. My daughter also takes Zantac two times a day to help with the problems she now has with her stomach. She now has migraines that she must take Imitrex for. We had to have her started on the Depo-Provera contraceptive to help protect her ovaries from the Imuran. The Imuran has helped, we have not seen any spots in six months. But it has compromised her immune system. She contracted the flu last winter and was sick for over six weeks. We continually see swelling, though it has not been as bad this summer. Now that the weather is changing, the swelling is getting worse again. Any activity, even walking, causes severe swelling. We are reduced to taking pictures to prove to this specialist that things are not going well. Unfortunately, my daughter is that small 2% of the HSP population that it takes aggressive treatment to hopefully remove this disease from her successfully. We cannot take advantage of the chance to get her braces because she doesn't heal well. She cannot play volley ball or roller blade with us. It makes it very hard for a young girl to be a normal teenager and for a mom to sleep with peace at night.

Comment from: ddk, 13-18 Female (Caregiver) Published: September 05

My 13-year-old daughter has been told this week that she has HSP. She had the bleeding into the skin from her feet to her middle-back and arms. She got tested for it, but in the last 12 months has suffered from a lot of chest infections, which seem to have been the cause of it. The blood results showed she has a low immune system. I now have to keep a record of her urine samples by using dipsticks to keep an eye on her kidneys to make sure there are no changes of blood present in her results. Although we have had to travel quite a distance away from home to find a specialist in HSP, it is worth it just to know that she is being looked after and there has been a reason to why she has had to have a lot of time off school. The school has been very supportive and have issued her with a medical pass to be excused from class for the toilet as so not to cause anymore stress to her body by having to wait a long time to go to the toilet.

Comment from: 25-34 Male Published: September 05

I was about 6 or 7 when diagnosed I was with HSP. In total, the ordeal lasted about a month or so. I was hospitalized for about a week or so. Initially, it began with a speckled rash on my legs with no pain at all. A day later, my ankles and feet were incredibly swollen and caused significant pain even just lying still. My family doctor was unable to diagnose it successfully, and upon referral to a pediatric specialist, we knew what we were dealing with. The swelling affected my entire body, even my skull. Sleeping was nearly impossible as the pressure of my head on a pillow would cause tremendous pain. Treatment was intense (blood taken daily for testing) and thankfully successful. I'm not sure of the exact treatment, but I know steroids were involved, most likely prednisone. I've not had any problems since. I am now 25.

Comment from: marcus, 25-34 Male (Patient) Published: February 26

I had Henoch-Schonlein purpura when I was 7 now I'm 25! My infection lasted for months and it led to kidney failure! I'm on medication still but I'm fit and well! I went through it all!

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

My granddaughter had this when she was about 7 now she is 16 and now is back in the hospital with it again. I hope they can help her, I guess she will always be prone to it since she's had it already; so far it has not affected her kidneys I hope.

Comment from: bitten, 25-34 Female (Patient) Published: August 08

I had Henock when I was twenty three years old. I am an Indian female living in South Africa. None of the public or private medical care could diagnose this until the proper tests were done a skin biopsy was taken etc.. When I first experienced it that weekend I was rushed to hospital due to excruciating stomach ache and vomiting, nothing helped their meds made it worse. I was in and out of hospital for six months, very little intake of food, constant stomach ache, extreme acidity in the stomach and reflux, lost fifteen kilos and was ready to give in. Thanks to my parents who went through it all with me. Day and night I overcame. Have fortitude. The best treatment was steroids -prednisone-for six months, drink lots of water slowly but surely drink it all up. Ice blocks to cool the stomach and a bit of egg nog if possible to treat the ulcer. Tremahexel for the pain allowed me thereafter I recovered. Any person that experiences this to its full might will know how important support and prayer along with good medical care is required.

Comment from: Marandtell, 3-6 Female (Patient) Published: August 08

When I was really little, about three or four, I had a weird bump in my spine. Later the doctors found out it was HSP. Since HSP is so rare, many people don't know what it is. But I do. It was very scary for my mother. I don't remember much of it. I have some arthritis in my fingers now. I couldn't walk. But I'm luckier than lots of people who get it.

Comment from: Denielle, 25-34 Female (Patient) Published: July 17

I am 27 and was diagnosed almost 2 months ago with HSP. I started with a small rash similar to bug bites on my ankles then soon became larger, and larger. I didn't have symptoms besides the rash until a month later. Extreme headaches, knee swelling, body aches, and kidney pain. A few weeks have past, most symptoms gone besides the embarrassing rash, considering its summer time and I'm in winter clothing. Reading every post I could the best solutions everyone has said is to avoid sun, take ibuprofen for inflammation including the rash, tons of vit C, avoid wheat especially and flour. No smoking, drinking, or chocolate. Try Epsom salt and oatmeal baths. I hope some of this helps, I'm still working on it my self. Best of luck!***

Comment from: JC, 55-64 Female (Caregiver) Published: July 02

My father has recently been diagnosed with HSP at the age of 58. He is also ex-military as someone posted that they were as well. He is being treated at a VA hospital in RI. His intestines, and kidneys have been affected severely, probably due in part to a late diagnoses. He was sent away from one hospital, and spent two weeks in another, until symptoms subsided. When symptoms returned he went to the VA, and is now being treated with a mild chemo. He was on steroids, but they were making the stomach issues worse. This has been going on since late April, and he was only diagnosed about three weeks ago. Not only is he on the chemo now, and a new steroid, they also have him following a diet similar to that of a person suffering from Chron's disease.

Comment from: Wil, 55-64 Male (Patient) Published: June 25

When I was nine years old I had my first bout with HSP. I had pulled up my pant leg to scratch an itch when my mother noticed the bright red dots on my leg, at first she thought I had colored on my leg with paint or something. After a further look at my legs she decided I hadn't. It started at my waist and went to my feet. At first there were no symptoms, but after a few hours waiting in a Military Hospital I was unable to bend my knees or walk forward, I could walk backwards, which I thought was funny, Mom did not. I was admitted to the children's ward (about twenty or so kids all in one big room) that night. I spent ten days in the hospital, two before being diagnosed with HSP, at the time they thought it was a reaction to penicillin, which I had been given a couple of weeks prior because of strep throat. I was the talk of the ward because of the HSP (I think every doctor in the hospital had a look at me) and because I had blood drawn twice a day( that impressed the rest of the kids because I let them do it without any fuss, no screaming or crying). It resolved it's self without treatment. They took photos of my legs everyday and said that someday they might be in a text book, so far none of the photos I have seen look like my legs. Since then I've never had penicillin, but have had two more bouts of HSP, one at age 35 and another when I was 41, never was able to determine a cause either time. Symptoms then were the rash but this time joint pain, abdominal pain, and blood in my urine. So far 15 years later have not had another episode, and have had no lasting problems.

Comment from: hspsucks, 13-18 Female (Patient) Published: April 24

I am 15 years old. Last year, I started getting back pains around my kidneys. Shortly after, I started getting these little red spots all over my legs. About a week later, I got food poisoning that lasted longer than it should have. I went to the doctor and at first they thought it was a UTI. After a week of being unable to even hold down water, I became very dehydrated and ended up in the hospital. Finally, I was diagnosed with HSP. I couldn't eat for the next week, and had unbearable stomach pains that had to be treated with morphine. I lost 20 pounds in two weeks and was not rid of HSP for two more months. I have scars from the spots all over my legs, and I still have stomach problems.

Comment from: 7-12 Female (Caregiver) Published: January 16

Both of my daughters had HSP when they were 6 and 7 years old. It started as what looked like small insect bites on their legs, then developed into large bruises. Their knees and ankles swelled, ran high fevers, were nauseated and generally very sick. The doctors said it was viral and was not contagious. My oldest got it first, and two weeks later, the younger one came down with it. They couldn't explain it, and still don't know what caused both of them to contract it.

Comment from: Sherry L, 35-44 Female (Caregiver) Published: September 26

My brother and I were seven when he came down with henoch-schonlein purpura (HSP). It was over 30 years ago and at that time, no one really knew what it was. The "rash" from his waist down looked like perfect round bruises with a red dot in the middle. The first hospital my parents took him to actually called child services because they thought he was being abused. Our family doctor knew better and suggested they take him to the children's hospital run by University. One doctor there knew what it was. There had only been two or three cases in the United States reported by this time. They thought HSP was a blood disease, but did not know how it occurred or how to fix it. It was a very long two weeks in the hospital, taking blood every few hours, and constantly checking his vitals. He was given a lot of steroids and antibiotics. He gained about 30 lbs. which took almost two years to get rid of. He's been okay ever since. The medical center used his case as study for over 20 years with all new interns.

Published: September 25

My daughter was diagnosed with henoch-schonlein purpura (HSP) when she was in kindergarten. Her pediatrician didn't even know what she had. When I took her to the ER because she was in so much pain and her knees and ankles were so swollen, a medical resident recognized it right away. What is interesting is that I was told that this does not run in families, but my husband's brother's son was diagnosed with it when he was 13 and it caused kidney damage requiring a kidney transplant when he was 16, he is 41 now. He spoke with his doctor when we found out about my daughter and he was very surprised. We had to watch her kidney function for about a year and she did well. The only thing I think she still has from the Vasculitis is trouble with her ankles when she does a lot of walking. For the longest time she would tell me it felt like someone was banging on them. She is 13 now and doing well.

Comment from: klm, 7-12 Female (Patient) Published: September 05

I had HSP when I was in grade school, and I was so weak, I couldn't even hold a water bottle. I had the rashes on my legs, stomach aches and my lower back where my kidneys hurt. What was very odd was that considering this virus is so rare, one other girl in my grade had it at the exact time that I did, and I have wondered if there was something in the environment that triggered it with both of us. Overall, my experience was really interesting, and I am aware of this for myself and others in the future.

Comment from: ayeup, 19-24 Male (Patient) Published: September 05

I was diagnosed with this henoch-schonlein purpura when I was 18, so about six years ago now. It was in the autumn months, which is when it is more prevalent. I initially suffered from a viral infection. Later that week, I developed pains in my abdominal area, and then came down with the meningitis-like rash. I was in the hospital for three weeks. All the symptoms described, I have had. However, I am or was one of the few who got renal failure as a result. It is believed to be chronic and not end stage. However, I am on continuing medication as a result. The thing I have found as a result of my diagnosis, is that I can't eat spicy food or red meat. My metabolism has slowed to a point that I am more prone to putting on weight than I used to be. This is one of those diseases that puzzle even the most genius of specialists. Bar the diet, I still get to live a relatively normal life.

Comment from: Lex Diamond, 19-24 Female (Patient) Published: August 28

I remember being diagnosed with this virus when I was about 6 or 7 years old. I'm 21 now. It was quite painful, and my legs had huge circles of broken blood vessels that swelled to the surface of my legs. I couldn't walk for almost three weeks and was hospitalized to be monitored. The swelling and arthritis became such a problem, it ended up fracturing one of the bones in my ankles. I had to be in a cast for a while. It passed, and I never had it again, but I remember it wasn't a very good experience as a child. It's probably the most serious thing that has ever happened to me this far, thank God!

Comment from: Ruby, 3-6 Female (Caregiver) Published: August 28

My child was 3 years old when she got Henoch-schonlein purpura. She has always had a high pain tolerance, and when she was in the ER, her feet and hands were swollen to the max and you couldn't even touch her without her yelling. I was scared. Even the doctor that had treated her was scared. She got transferred to a bigger hospital with a pediatric staff. She has never been sick. Now she has this. The rash came two days after her swollen joints and the pain.

Comment from: 5121, 25-34 Female (Patient) Published: August 26

I was diagnosed with HSP in 2005 at 23 years old. I had the speckle rash and extremely swollen ankles. The vessels of my eyes would also spontaneously burst, making the whites of my eyes a scary red color. I have found that if I cut out certain things from my diet, especially beer and wheat products, my condition improved immensely. Hydration also played a role. I feel sometimes that HSP is confused with celiac disease. As long as I try and keep flour and wheat out, I feel better. I still have lingering speckles on my feet and ankle bruising, but it is far better than before.

Comment from: Lisa, 25-34 Female (Patient) Published: August 26

I am 25 years old, and I got the rash on my lower legs, ankles, toes and the arch of my feet. This happened two weeks after a viral throat infection. I then had very bad joint swelling and pain in all joints. My Henoch-Schonlein purpura put me in hospital for four days. I received lots of tests and a skin biopsy. The rash on my legs blistered and have now are scared. I am on prednisolone. It has been almost three months, and I am still having outbreaks if I do anything that puts my body under pressure, such as rushing about.

Comment from: Graciemae, 25-34 Female (Patient) Published: August 12

I was diagnosed with HSP just over two months ago. I am 34 years old and it started with the rash on my legs. It took my doctor about three weeks to diagnose me. I have had several outbreaks of the rash since then. I have not had any of the joint inflammation or the stomach pains. To my knowledge, my kidneys have not been affected either. I have now been off my medication for just over a week and my rash seems to have completely subsided and hopefully will not return.

Comment from: Martha, 19-24 Male (Caregiver) Published: August 08

My oldest son had HSP at age 11. He was hospitalized for more than two weeks and suffered at home for another five. It was the scariest time as a parent I have ever gone through, and it took doctors four days to diagnosis him. We didn't get any accurate information until he had been transferred to Children's Hospital. He is now almost 21 and is still having abdominal problems. I have tried to get information from the medical profession regarding residual effects from this to no avail. It is a rare autoimmune disorder, and they never did find the cause, so my worry continues.

Comment from: Toni J, 45-54 Male (Caregiver) Published: August 05

My brother has had henoch-schonlein purpura for two weeks. This is the sickest I've ever seen anyone. He started with a rash, swelling joints, swollen eyelids, and now severe intestinal problems, vomiting and blood in diarrhea. He has extreme weakness and joint and back pain. The doctor did not recommend hospitalization, but I think he should be in the hospital — at least to get some fluids.

Comment from: 3-6 Male (Caregiver) Published: September 25

My son has just been told he has henoch-schonlein purpura (HSP), he is 5. Although he has not had much swelling and tummy pains, I cant help but think this will happen soon. We have just been told today and he has just been discharged from hospital. He has the rash and I did think it was meningitis which was really scary. So I am not sure if he will get the swelling or not. I really hope not, although he has been complaining his ankles are sore. I really sympathize with you all because it is a worrying time.

Comment from: 3-6 Male (Caregiver) Published: September 10

My 3 year old recently got Henoch-Schonlein Purpura. And it is the scariest thing I have ever experienced. He has strep and then all of a sudden bumps started appearing all over his legs and buttocks. At first they looked like bug bites or chicken pox. I took him to the ER and they told me he had HSP. We are still going through the very large purple spots they are now moving to his elbows. They are about the size of a quarter now. Thank God, we have not experienced joint pain or abdominal pain.

Comment from: Kristen, 7-12 Male (Caregiver) Published: August 28

My nephew is 8 years old and has just come down with HSP. He has a rash, and he is swollen in his private areas. I have not seen or read anything about swelling in those areas.

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