IS THERE AN END TO HSP EVEN AFTER ITS GONE???

hello I am sorry to hear of your experience with H S P. My son who is now 19 got H S P when he was 12yrs old.

No medical person will confirm my suspitions but he contracted H S P 18 days after having a T B vaccination at school.

I do sympathise with you as this can be a very long illness. He spent 9 weeks in hospital, of which 12 days were in the high dependency unit.

the bowel involvement my son had was severe and he went to theatre to have a cholostomy bag fitted. They found upon opening him up that his bowel ( intestines ) had the same rash as his legs, and had gone spongy.

Luckily he had no joint problems but H S P has left him with kidney desease. One kidney has failed altogether and he is waiting to have it removed. ONce he was put on steroids the improvement in his bowel involvement was miraculous. He was a normal 12yr old, and within weeks had gone down to 4st 2lb. So he was fed through a tube into his main vein in his neck. I think they call it T P N.

The cholostomy bag was removed after 4 months. When his bowel had rcovered. He was clear of H S P for 5 months before it returned again, but only for a couple of weeks.

It is very important to have your urine checked for protein for a long time following the clear up of HSP. WE were told that most doctors will never see a case of H S P. Without severe or proglonged symptoms, this illness can be difficult to diagnose. There is an end to it. But like ouselves, it stays in the back of your mind. I hope you make a quick and full recovery.

Hello I would like to thank you for replying to me.

Its always better to talk to someone who has been through the experience then books and medical notes.

I am very sorry to hear what your son has been through,it was such a severe case I can only imagine what was going through his mind.

I am especially sorry to hear about the Kidney disease,I hope everything turns out ok for him.I have gone for Check ups with my doctor regarding my kidneys and I still have a lot of protein in the urine.

Unfortunately this past week HSP rash has flaired back on my legs and my stomach is swollen Im just hoping that It wont all return as severe as it was last time,Blood pressure is also very high since I have this disease and I am currently on blood pressure tablets for this,doctors are unsure if I will b on these for life.

I am very worried about the kidney involvement and bowel involvment i can imagine what you son went through as the pain is so unbearable and unimaginable in the stomach.

Pleasee send my regards to your son on waiting his operation he will be in my thoughts.

thank you for your kind words.

Áine

Hi

I am 42 year old male from chennai south india. I have been having HSP since october 2004. I had intermittent episodes for the first 7-8 months which were very severe ie rashes with severe stomach pain, but the stomach pain would last only for few days. I was treated with steroids on and of for almost a year. After may 2005 my symptoms have become less severe gradually. I dont get the stomach pain anymore. But i still get the rashes occasionally, maybe once a month or so. I kind of was hoping that it will stop eventually. But to my utter dismay i kind of had a bigger flare up ie the rashes were more severe ,but still no stomach pain.

I have stopped all treatment after the first year except for blood pressure which i suspect was caused by HSP. I had some marginal protein loss in the first year, but has been normal since i started BP medicine. I lead a very normal life otherwise. I just cant figure out what causes these flare ups. I hope your problem has also subsided. I would like to hear from other adult patients about their experience.

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Hello.. I understand your frustration. I was first told of the HSP in 2005 following severe purpura (rash). I was treated with prenisone for 3 months and that took care of it for the moment.. but it is back just a few weeks ago and I called the doctor to see what he will tell me.. It is very painful..

Aine your experience sounds very similair to mine. It really was the hardest thing I've ever had to deal with and was very worrying for both me and my family. I can totally sympathise with what you are feeling right now.

I am a 20 year old female and I was diagnosed with HSP in March 2005. However I had already had the disease as a child although this had lasted only a few weeks and cleared up with no complications. This time I was in and out of hospital for around 4 months. It began with a throat infection and then the appearance of the rash on my feet and escalated from there. I developed very severe rash all over my body and like yourself very severe stomach pain which is due to the stomach trying to \"pass itself,\" the internal bleeding leading it to think there is something to digest. I was literally doubled up in pain and on every type of painkiller imaginable. Mainly intravenously throughout the chronic stage of the disease as I was unable to digest anything due to the vomiting. I couldnt eat or drink for weeks and was in constant pain. I also developed large swellings in my hands. I too had a high dose of steroids intravenously and this helped enrmously, I felt so much better in a very short space of time. Despite the horrible side effects I really do think steroids are the way to go.

I continued with the prednisilone and a painkiller called temgesic at home and gradually got better, with the odd relapse. I was also put on the immune suppressant azathioprine in order to prevent further flare ups. This did lead to me constantly catching infections though. It took many months to feel \"myself\" again. I too was exhausted all the time and never felt 100 percent. Psychologically I also found the experience very hard and I would reccomend counselling.

As a result of the HSP I now have kidney damage and kidney disease. I now take ramipril, a blood pressure reducing tablet and also penicillin daily to prevent an infection that may trigger the HSP again.

The good news is as horrible as this disease is, you will get better and I am now able to live a normal life. Despite the kidney problems I am well. The thing that scares me the most is that the disease will flare up again and I will have to spend a year of my life unwell again.

I am sending all my support and I hope you feel better soon

Alexandra

I too, Alexandra had a awful year due to HSP. I was on the same medications as you minus the penicilin. I am currently still on ramipril and altace. I was very close to chronic kidney disease but it managed to heal enough to get out of that zone. Im leaking protein still. Went from leaking 7 g to .5g now. Miraculous recovery. Add me at **** if you need a chat (anyone). Take out the dots from above email.

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Hi... my son suffered from HSP 6 years ago when he was only 4 years old. He was admitted and sent away from hospital twice before it got bad enough for someone to take notice. All of his joints were swollen, including his testicles and forehead - he looked dreadful. Accompanying the pain from all of this was diarrhea and vomitting and he lost 1/10 of his body weight, he had an op on his testicles to check no damage done. Luckily his kidneys were ok, but we had a very difficult 3 weeks of hospitalistion not knowing when he would recover, as each joint went down, another would swell, even his stomach and he cried constantly. One day it took 8 people to hold him down to get another catheter in him.

Anyway he awoke one day in hospital and having not spoken for several weeks, he suddenly started talking with a Scottish accent!! we hail from the midlands so god knows where this came from - he quickly regained his health and we just had to plump him up again (he was always on the lean side anyway so looked like a bag of bones). The docs in Leicester said it was one of the worst acute cases of HSP they'd seen.

Reading these accounts reminds me of my own experience of HSP in 2007. I am male living in the UK and at the time was aged 40. Whilst skiing in France I had some tenderness in my ankle and then noticed what looked like a meningitis-type rash on my inner thighs; lower legs and feet. This was rapidly followed by the onset if nausea and a feeling if general "unwellness". When I returned home a few days later my wife - who is a nurse and a Health Visitor - immediately suggested it could be HSP, havinh recently seen a child with identical symptoms. At this point, the arthritic pain in my ankle seemed bizzarely to have rotated through each if my main joints - ankles, knees, wrists - one at a time and I was beginning to suffer regular (2-3 hourly)vomiting.

My first visit to hospital A&E was inconclusive. The consultant suggested that my ski boots had caused what I now know to have been a purpuric (haemorrhagic) rash! Commin sense should gave warned him against a ridiculous conclusion like that but he was, frankly, clueless. I returned home (now some 6 days since the first symptoms and at this point things really started to go downhill fast. Episodes of vomitimg increaded (I coulldnt hold down even fluids) and started to vomit blood. I also started to suffer melena (blood in BM's) and stomach

cramps. I had to be taken to hospital by ambulance and was immediately given IV fluids etc. Fortunately, my wife by now had become angry about the failure to diagnose and treat me ( since the first A&E visit she had taken me to another Dr who was also similarly clueless and dismissive of her suggestion that it could be HSP). This time I was seen immediately by an excellent GI consultant who immediately diagnosed HSP and congratulated my wife on spotting it! I began a course of Predinsolone and he explained that the symptoms were due to Vasculitis (swelling of the tiny capillary blood vessels in the skin; joints; stomach lining and kidneys) which cause the internal bleeding which in turn causes the rash; swelling; nausea; vomiting and blood/protein in the urine. I spent two weeks in hospital on that occasion as my GI symptoms were treated then discharged. I was however referred to a Renal consultant for a kidney biopsy a week later to check for kidney damage and was re-admitted to hospital for that procedure.

It was now some 4 weeks since the first symptoms and whilst the rash had gone, the stomach bleeding continued and my urine was 3/4 + of blood and protein...The biopsy procedure was fine (a liitle uncomfortable but not seriously painful) but there was evidence of some scarring due the vasculitis (a worry). Unfortunately, Zmy Hb blood count then had dropped to 8 so I had to have transfusion. Two days later I collapsed whilst trying to get out of bed and awoke with a lot of fussing Doctors and nurses around me. I was given another immediate transfusion as my Hb count by then was down to 4.2 - not good! This was probably the worst point as from there, the bleeding stopped, my symptoms resolved over a further couple of weeks and I was eventually discharged with a veritable pharmacy of drugs including 120mg/day Prednisolone which was to reduce and ve relaced by Cyclophosphamide - a powerful immunosuppressant to "turn down" my immune system ( which was the cause of the vasculitis). That treatment continued for 6 months.

A friend who is a GP visited me in hospital and told me it would take a year to get back to full fitness - I laughed at the time but he was absolutely correct. Gradually the drugs were reduced, my symptoms disappeared and after four years of quarterly check-up's with the fantastic Renal consultant who treated me, I have regained full/normal kidney function and have "recovered". I have had no repetition of the symptoms for 6 years.

Having read the accounts above I am hugely sympathetic to those with chronic, recurrent HSP. My own experience was clearly an acute, aggressive episode and one I wouldnt wish on my wirst enemy.

If anyone reading this can take any comfort from the fact that HSP is not always chronic I do hope my account is helpful.

I have a 10 year old boy who was diagnosed with HSP in September last year. My husband is in the military and was deployed to Afghanistan at the time. It started with the rash, and a swollen foot. I took him to the doctor and he was diagnosed with a staff infection, and sent home with antibiotics. By the next day he was back at the doctors office with stomach pain and a rash that was all over his lower legs and bottom. He was then diagnosed with HSP and told that give it a week, the rash would go away, he may have some discomfort but he would be fine. But he was not fine.

The next night I rushed him to the ER. He was having horrible stomach pain, vomiting blood, bloody diarrhea, it was awful. He was hooked up to a morphine pump for almost 2 weeks. The doctors there decided to give him iv steroids to help with the pain. At this point he had small amounts of protein and blood in his urine. At the end of the 2 week stay, he was sent home with oral steroids.

By the next day, the rash was back, and his whole body was covered in them, legs, arms, neck ears, face, everywhere. They upped his dose of steroids, and he then got the joint pain and swelling. He got to the point that he could no longer walk or sit up.

A few weeks later, his protein and blood amounts began to rise quickly.... we were sent to a specialist at Duke University. After a few weeks, he underwent a kidney biopsy. The doctor said he had never seen so much damage. Both his kidneys are 95% damaged. Some is permanent. Some they "hope" they can bring back some function. For the last 4 months he has been on chemotherapy (cytoxan). Currently we are taking a 2 month break to see if his body will repair itself at all, as the chemo is very harmful to the body. Everytime he gets sick, he has a recurrence of petichiae, and his blood numbers go out of whack, and being on chemo, he catches everything. Currently his protein and blood urine levels are a 3+. His protein-creatanine levels are down to a 3.6 from an 8.6. And his albumin is up to a 2.8 from a 1.7.

I never thought a little boy who was never sick... ever could be so sick, all of a sudden.

Hello! I'd like to point out before I start, That I'm from the States. Not the UK, Not Ireland, Nowhere on that side... I found this post along with the website by searching for some HSP related things on Google.

My name is Shilo, I'm now fourteen years old. I know, Young, But When I was six years old, I was diagnosed with this disease.

I want to tell you, There was an end for me. But according to my doctor, The disease still has a tiny piece left inside of me.. A simple spark could light it up all over again, at any time.

One day, I came home from a Valentines day party at school. I had a sore throat, Sick stomach, and extremely bad abdominal pain.

The next day, I got kept home from school, and taken to my doctor(Amazing doctor, Just pointing out.). He told me I had Strep throat, And sent me home with antibiotics.

Over the weekend, I didn't improve very much, But we just thought of it as a little stomach bug... that is until Valentines day.

I woke up around dawn, Throwing my guts up, Bruised legs(I didn't have the rash, I had the bruises that came one after another.. Like a collage.), And I could hardly move. My arms and legs ached to the point I could hardly move them. More particularly in my ankles and elbows.

My father called my doctor, and explained what was going on.. He told my father that he'd place a call for an ambulance to get me to the ER, And that he'd meet us there.

When we got there, They checked me over several times, Finding nothing. My doctor finally arrived, And pretty much raised hell with the nurse and doctor for not taking my blood or anything, Anyways, He took about five blood tests and when the results came back hours later, He told the other doctor to call Childrens Hospital (In Pittsburgh. Big city in my state, Pennsylvania.) and let them know of my arrival, And to have an Life-flight ready to escort me, As i needed to be there ASAP.

I was of course, Terrified. I'd never rode in a life-flight in my entire life.. Hell, I hadn't even seen the inside of an ambulance before that day..

Anyways. When I arrived, They took me into an empty examination room, and began to check me over really good. I remember a doctor coming in, checking me, and then pulling the nurse and my parents aside to speak with them. I remember seeing my mother start to cry, And my dad trying to comfort her.

The nurse came back over as the doctor left, She had me take a few sips of water(Which I vomited back up seconds later.) and call extra nurses in there.

Next thing I knew, Three nurses plus my mom were holding me down to the bed, And another nurse trying to shove a tube down my nose. All it resulted in, was me vomiting blood over and over.

I remember it was probably the most excruciating pain I have ever experienced. I honestly don't think i'll ever feel something as painful, And i've suffered alot of painful things since.

They inserted an IV and then, I was out.

I woke up in the hallway, being wheeled past several rooms. I remember asking for something cold but no words came out. I felt something cold in my nose, i felt around and I felt a tube literally IN my nose. I started to cry, Obviously. I was a six year old girl who had just gone through hell, and now I had a cold tube inserted into my body.. The nurse noticed and explained that, since they had no success in inserting it earlier, They ended up doing it while I was under. I now, After eight years, understand that it was a feeding tube. It's really the only thing that kept me alive.

I remember the next three weeks went by horrifyingly slowly. Nothing really important happened though.. Just the fact everytime they cleaned my tube, I vomited for nearly a half hour straight.

Anyways, It was around the end of February/early now, Disney On Ice was in Pittsburgh.. I remember being so sad because I had gotten tickets for my sixth birthday(the June before.) and I couldn't go. I remember everyday they made me get up, go down to the play room, and socialize. But I didn't ever want too, Because I was the only child of all of the other ones down there, who had to take my IV thing with me. Everyone knew of my disease, and I got really strange or disgusted looks from the other children, So I always dreaded going, I remember one day, they still made me go down... but They didn't pressure me to talk to anyone.

My mother and I went to the PC's and she played games with me the whole time, Mostly in attempt to make me smile at least once.. But i'm not going to lie, I don't remember smiling at all while having that disease. I looked up when I heard kids laughing and cheering to see Belle, From Beauty & The Beast,(Who I found out years later wasn't the Actual Belle. It was the skater who played her for Disney On Ice) come in, followed by a camera crew from KDKA TV news(My local station). I remember she signed autographs for everyone, And me being last. She talked to me the longest, Asking me how I felt.. What was wrong.. Who my favorite princess was(To which I replied 'Belle' bc who doesn't love that angel?), And she signed a long message for me on my wrist band and in my small notebook my mom and I made a few days before in the playroom.

That night, My hospital room got a call from one of the editors from the KDKA studio, asking for permission to use the footage of me and Belle, and to tell my story. My mother and father agreed, Even though I begged them not too. I didn't want people to know my situation, I never liked attention and i sure as hell did not want THAT attention.

Anyways, The next night, They spent around ten minutes just explaining my story on the news, showing the footage of me and Belle. And for the first time, I actually smiled when I watched it.

The next day, My school called and told my mother that we should be getting some surprises soon, on behalf of the district.

Days later. They came. I got a garbage bag full of get-well-soon cards from every single student, pre-k to grade 12(last before college here. idk how it is on that side) in the entire district. People I didn't even know.. I was so overwhelmed and happy. They sent me new flowers every single day for my bedside, A fresh bouquet every morning. They also paid my medical bill(It came out VERY expensive) and parking(also, expensive.).

And then... Before I knew it. Weeks later.. I got to come home. They had the tube removed, They had my bandages off, the IV out.. My bags packed.

I had to remain out of school for the rest of first grade, but I didn't fail because I had a tutor at the house, She taught me what my teacher would have. I had been put on steroids to help me regain my weight and appetite, As i couldn't eat OR drink anything in that whole time I was in the hospital. I had been 68 pounds when I was released.. It was sickening because you could vividly see my bones.

But I did get better. I'm fourteen now, as mentioned, I still have a very bad immune system and alot of things that followed behind the disease.

Thats my story.

To this day, I still suffer excruciating arthritis in my ankles and my elbows. I still get a mild rash, that I believe is an after-affect from the HSP, every now and then around my ankles and feet, Sometimes my arms or back. I still get occasional abdominal pain.. But that could be anything.

The disease left me traumatized for years, and I'm still not over it fully.

My son is 3yrs old & goin through this as well. His rashes r gettin worse on his legs,arms now moving to his butt,back & stomach. Hes been really tough n not lettin it bother him its like he doesnt even know he has it. He itches n swells up from time to time,been 2 hospital cuz he got dehydrated n throwing up. It sux theres no cure or meds. The doc just said th keep him hydrated n eat plenty of protein & for pain Tylenol or ibuprofen. Its been hard one as a mother to c my youngest goin through this im 27yrs old n never seen nething like this before. Does the rash leave scars,does it go to face or front private parts? Does it come back after getting it once?