I am an adult and have the chronic form of this disease....

I am 28 yrs old and have had HSP for about a year but have only been diagnosed recently. The first time i noticed anything was when I was out walking and and very suddenly my hands became covered in tiny red spots. This persisted on and off for some time and then I began to get abdominal pain and joint pain. Then overnight my legs became covered in bright pink spots that faded to purple and then away in 3-4 days to be replaced by new spots. Initial contact with my GP was fruitless and it took a further 7 months before I was refered to a dermatologist. Several months of tests followed nearly every week for blood in my urine and various blood tests including G6PD. I now am on Dapsone 50mg per day and wear compression stockings to stop the blood vessels in my legs rupturing.

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I was just diagnosed on Saturday, June 3, 2006, with HSP by my new physician. I have been suffering from it for over two weeks. Initially my primary care provider was an Advanced Registered Nurse Practitioner but I have now switched to an M.D..

HSP first appeared on my hip-bone areas (both sides) as reddish itchy places, looked like hives, then turned to the bruised look typically described. Before the hip area brusing faded, it appeared on the back of my thighs as well. This is when my ARNP thought it was a fungal infection and treated me with a steriod cream, and antibiotic and alavert.

It faded (part of the normal course of this disease, I am learning)but began spreading to other areas, like my back and the back of my upper arms.

I am a 37 year old woman.

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i am 21 yrs old and i was first diagnosed with hsp when i was 10. i was at a neighbours fireworks night when my ankle started swelling and a rash similar to the meningitis one appeared all ova my lower body. since then i have had a few more attacks but not for 2 yrs thankfully. but i was wondering whether anyone else with hsp has been left with bad joint aches n pains? i have had this problem for 11 yrs,i kept telling my doctors when i was younger that i couldnt walk or run far without them hurting for days afterwards,he said it was the hsp. but now they are saying it is not linked to it,but i think otherwise. can anyone help me please?

It was good to be able to read someone elses views/experience as i feel a bit like a guinea pig! I was diagnosed in Nov with HSP . I have rashes, abdominal pain and joint pain. More recently i have protein in water. I have been put on steroids which i am not sure are really doing anything ,has anyone been on prednisolne for hsp, if so i would like to hear how you got on

Hi, im a 35 yr old woman who was diagnosed with HSP in 1997, after being admitted to hospital with abdominal pains. I was put on steriods & dapsone following diagnosis, which eventually eased the visual symptoms. It was all made worse after my son was born, which has left me in stage 3 kidney disease. I now suffer severe arthralgia in my knees hands & ankles, proteinuria, hematuria & problems with my bowels & kidney pain. No matter who i speak to, no one knows what will happen with my condition, & ive never been able to speak to anyone else with this condition in adult hood. Would anyone like to get in touch & share their experiences?? I hope so! would love to hear from someone else in the same boat! :?

Hi all! I'm glad that I ve found this forum at such a difficult time. I am a 26 year old female living in southeast of england. I have been suffering from suspected case of HSP but till this day it still hasn't been confirmed. I was finally refered to a demertologist two weeks ago when the 6th reoccurance happened. And now I'm pushing for more tests to be done. HSP in adults can be very tricky and hard to diagnose. I wonder if there are many out there that are suffering from this and confused like I am! The rash itself doesn't bother me too much. However, I'm worried sick about the long term kidney involvement.

I suddenly developped a rash in Feb 2007. Strange enough, it started on my neck and it was itchy. I wasn't worried, but a few days later I spotted lots of tiny pin sized dots under my skin all over my body. They were not itchy or painful, but this time I was concerned. I suspected a bleeding disorder. I went to my GP however he was clueless. The initial rash disappeared after just a week with no scar or anything. Two months later though, after a climbing course with my colleagues, I woke up to find tiny red dots all over my body again the next day. This time I suspected HSP, and I went back to my GP. He sent me to A&E as he suspected meningitis. And of course it ended up inconclusive again. When it happened a third time, I was already aware of the possible HSP and renal involvement. I pushed for a urinalysis to be done along with the blood test. The urinalysis showed trace blood and trace protein. But my GP said i would be ok. It happedn another two times in the following 3 months. I was sure something was wrong. I kept requiring urinalysis. However they were both normal. Recently after going bowling with friends, I had all over me again. This time I was determined to get an answer. I was refered to a demertolofist. He had a look and said it didnt look as severe as HSP should do. I wasnt happy as it seemed to me he jumped to conclusions. He arranged urinalysis and blood test. The urinalysis showed trace of blood again(no protein touch wood). It has been sent to the lab for further examination. And I am still waiting for the results to be back.

The reason why I am so worried about this condition is that my mother had HSP and it resulted in severe kidney damage because she left it too late to be treated. I have been told that HSP is not a hereditary disease. However I just cannot explain what has been happening to me in the last year. I didn't have any joint pain or stomachache, so the diagnosis has been extremely hard. I am fighting to get an answer this time. Do I have HSP? And is that why I have trace blood in my urine?

I totally understand what everyone out there with this condition is going through. It is so frustrating and stressful. Please get in touch with me. I would really appreciate that.

I hope all the best to all of you.

Hi all

My daughter had henloch shenline purpura when she was 3 years old. She was in hospital for 8 days , She is 19 next month and has never had any problems from that illness.

W were told its a rare illness and effects boys more than girls. They even had student doctors in to observe and learn and took pictures of her rash and swollen legs for medical purposes.

She now has a beautiful baby girl.

Melbi

I am a 43 year old female that has been living with Henoch-Schonlein Purpura for the last 3 years, It all started with a sore throat then swelling and coca cola coloured urine,at the same time I had my legs waxed and the purpuric rash appeared immediately,when I went to my GP she realised what it was and that day I was admitted to a renal ward 60 miles away, I was there for over a week and during that time had a kidney biopsy and was diagnosed with HSP with nephrotic syndrome (chronic).

I was put on a strong dose of prednisilone,a chemo type drug(3 months), medication for lowering cholestrol which had shot up to 10.4 and high blood pressure drugs to reduce the loss of blood from the kidneys and water tablets to get rid of fluid retention.The chemo was taken in tablet form for 3 months, no great side effects, mostly tiredness oh and early menopause, but not too bad, infact during this time i even had a holiday in France for 2 weeks.This treatment seemed to do the trick as the protein in my urine reduced massively.I will always show protein in my urine as the kidneys were damaged but am told that I have normal kidney function.

I am still on all other meds but am currently trying to come off prednisilone as bone density not too good now.

I am down to 4mg daily but I am concerned by how puffy I am getting and extremely sore joints,I see a specialist every 3 months for bloods etc.

I would love to hear from anyone going through the same experiences as this illness can be quite a lonely experience,my family are great but I don't want to bore them with talking about this.

I'm a 23 yr old female, and I was diagnosed with HSP when I was 17. I had everything but the abdominal pains at the time, and once it went away it was gone for quite a while. HOWEVER....Just recently it's been popping up all the time, really only when I stand up for long periods of time (especially in heels!) and I was under the impression from the doctor, that once it cleared up I'd probably never see it again. So just recently I've been looking it up as much as I can, and not finding much that has to do with adults or it constantly coming back, when I came upon this forum. My question to the starter of this feed is, should I consider mine chronic too since it's always coming back? And I've just started having the abdominal pains too...I'm not on any medications, so I'm just wondering why I constantly get it. It'd be really nice to hear from other people who have this. If you could, e-mail me at:

I'd really appreciate the help!

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I am a 48 year old male and started with what we now know as HSP 10 years ago. Started with the rash mainly on my feet and legs at that time and the occasional sores. Doctors were trying to convince me for years that it was an allergy as I have frequent recurrences, i am lucky if I have a week off from it. I was finally diagnosed after a barrage of tests carried out by a dermatologist which included biopsies 3 months ago. The possibility of renal issues is worrying as I was born with one of my kidneys being a lot smaller than the other. I have chronic joint and muscle pain especially in my hands and back to a stage where I can hardly move after sitting down. The only thing I was given was Eleuphrat Ointment which is expensive at $45 per prescription which lasts 5 days. The rash now goes from my feet to just below my chest and down both arms and has recently started to appear on the back of my hands. I also find that i am extremely tired all the time and find that I need to keep covered up as it is proving embarrasing when you hear kids talking to mummy or daddy about the rash.

Everything I have read so far has being about it in children and that usually only 1 or two outbreaks, so far this year I am on my 23rd.

 

I'm 30 years of age. I've had HSP for 4 years. i get horrendous rash up my legs that burns terribly and then itches and can be very severe. It came out of nowhere. It completely dissappeared when i was pregnant with my son and only reapeared 6 weeks after his birth which to me sugguests it must all be a hormonal thing as they say your levels go back around 6 weeks. I've had few spot outbreaks since then but now i'm back at work, tired and rushing around its coming back like it used to. I always have blood and protein in my urine and tried various immune suppressing drugs to no avail. sick to death of it. I cannot entertain alcohol as the rash and swelling is unbearable. i was told orignally it would last only 6 weeks....here i am 4 years going strong. In its worst moments i legs and feet are completely covered and swollen (once had to cut some shoes off my feet) and up the under sides of my arms and backs of my hands and my torso up to bra level is covered. its demoralising. Knowing im not the only one is reassuring. Surely in this day and age tho they would know how to stop this. I've only ever seen a dermatologist about this but i'm now going to my GP to ask to be sent to Rheumatology. Supposedley they know more. Heres hoping.

Iam a 49 yr old female. I was diagnosed 7 years ago with HSP by a rumatologist.  This was the most Horrible thing I have ever been through and now I am going through it again. I had been having arthritis in my hands, feet , knees, wrist, arms & pretty much everywhere for years. But this was different. I felt really bad for a few days prior to the purpura breaking out. I did not have any small red spots. I had large purple black patches on my left leg, butt & stomach. These patches developed into extremely painful  burning, blistering sores. The outer skin fell off and I had raw flesh patches 4 in dia  on my leg. It took several months to heal. I have horrible scars. The only thing that kept it at bay was the prednisone. I took prednisone for about three years. Now suddenly I am going through another bout of this disease.  Thank goodness this time I knew what it was and called my Dr who started me back on the prednisone before the purpura had a chance to really progress .

 

I have an appointment tomorrow . Hopefully I can get some relief.