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 hope your well i was very interested to hear that you are also living with hsp. I contracted the illness at 19 and have had it for nearly 3 years now. Like yourself I also now have stage 3 kidney disease and take steroids and kidney replacement medication daily. Please reply it would be great to chat with you as i have never met anyone with this illness
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.
just wanted to say my little girl at 1 yr old ha suspected meningitis and it turned out inconclusive and i got told it may have been hsp but i got told it was harmless obviously not do any of you think i should look more into this or not hope you are all fine and so sorry for butting into this conversation take care all xxfrom clare x
Hello All,
Henoch Schonlien Papura HSP, is predominantly a childhood disease however as we now know adults can have it as well. I have been diagnosed with it about 4 weeks ago, however before that was established, the symptons i had to live with proved that there was hell on earth.
Like everybody else it is hard to find a forum or chatroom or something similiar where people can share their experiences except this site which is good.
I am worried too that this HSP may end up in the Kidney, they do say however that if it has not manifested itself within 3 months of presentation then the chances of Kidney infection can be rare, having said that, i wonder if it can affect the kidney whilst recieving treatment for it.
Currently i am receiving treatment with Prednisolone currently 80mg and Azathioprine 50mg combinded, to be treated for next 3 months with dosage slowly reduced to a maintenance level to keep immune system supressed, after that god knows what will happen, the clinical examinations and reports from around the world i have read all do state however that the prognosis is generally very good, but only if there is no renal involvement, the medical examinations also state that the chances of renal involvement is higher if at the time of HSP presentation the patient had hypertension (highblood presure) or suffers(ed) from it prior to the HSP onset, either way it is a very worrying prospect. I am cautiously optomistic that i should/may pass the renal failure or infection stage, but who knows, only 2 months ago i was a fit and healthy person.
I am a 39 year old male in London.
Of course naturally i feel everybodys pain and sorrow out there. I would like to believe that i caught my HSP rather quickly, think it was 4 days of tiny red dots appearing on my foot and lower legs before A & E visit.
There was of course, severe abdominal Pain, rectal bleeding, and at one point passing just fresh blood, loads of it, it was so bad the doctors suspected either C.DIFF, Ulcerative Colitis or CROHNS disease, i had to have a Colonoscopy (camera from the bum) and in the intestine they found traces of HSP, which caused inflamation and bleeding, the camera thru the mouth showed HSP in the stomach and Helico Bactor Pylori virus. I am happy to say C-diff UC and CROHNS were all negative. So that just left me HSP.
My next appointment is in a couple of days, i have a bit of soar throat thing coming on which is worrying me alot, coz i hear its hard to get rid of infections when your immune system is suppressed.
Apart from that I will monitor this site closely and see if i can give and recieve some support.
Good luck to US ALL.
Hi there,
I am a 19 year old female currently going through my second bout of HSP. I am very glad I found this site. I feel terrible to know that there are other people out there who have gone through the same horrible thing as me, but at the same time, it feels nice to know I'm not alone.
It all started last September when I noticed small red spots on my legs. Being a pretty active and busy person, (and at the time I was fencing 12 hours a week and going to school full time), I paid little attention to them, until they seemed to spread and get larger. I went to the doctor who basically shrugged and told me they we bug bites, which clearly I didn't believe. About a week later, (they were gradually getting worse as the week progressed), I began experiencing pain in my abdomen, lower back and legs, I was vomiting, as well as running a high fever. Over the course of a few hours the spots grew- each one of the turning into a massive blister approximately 1 inch across. My legs and feet were so swollen i could barely walk. I went to emergency, and was surprised when they told me that I would be staying the night. I had no idea that I would end up staying almost a month there. They diagnosed it almost immediately as HSP, and for the next few weeks I saw various doctors and specialists, and managed to completely baffle all of them. They stuck me on prednisone, which did nothing but make my face puffy and my hair fall out. They couldn't figure out why it was so bad, and why it wasn't going away. Luckily, I had no renal involvement and my doctor continued to monitor me long after I was out, (just in case I was to show signs of damage later on, as is sometimes the case with HSP.) During my third week in hospital the lesions appeared to healing somewhat, and my abdominal pain and other complaints seemed to be lessening, although I was still experiencing high fevers at least every second night. They let me out shortly after seeing any glimmering hope of improvement, but I didn't really start to heal until a few weeks after being back at home. They gave me loads of material for dressing the wounds, and boy did I need it- I had really nasty open sores all over my legs from my knees down. It was a good month and a half after returning home before I could wear socks without bandaging my feet up first.
After they fully healed, I was very happy to fall back into my active lifestyle again, finally I was able to fence, swim, run, heck- walking was still a novelty. I lost so much muscle laying in that bed in the hospital I was very eager to get it back again. The scars were pretty bad (the doctors kept swearing up and down while I was in the hospital that there would be no scarring..) I went to my dermatologist to see what could be done about them and he said that they weren't actually scars- just hyper pigmentations from the wounds, and that they might take up to a year to go away. Well, it's almost been a year and they are exactly the same. Trust me Mr. Specialist, these are scars. Hyper pigmentations don't dent the skin like scars do.
Anyhow, for the past few months I've been getting the little red spots, but they never progress to anything more. Last week they did. They started to blister, I got a fever, felt sick, my legs swelled up, and the rash developed. Here I am again. Now my legs are just as bad as they were when I was in the hospital. I finally got in to see my specialist yesterday and he didn't have anything helpful to add, except that they will be sending me for weekly tests for my kidneys and seeing me every week to keep an eye on the sores. That's really all they can do I guess. I'm just frustrated, in pain, and really fed up.
Right now my feet are so swollen that when I stand up my toes don't touch the floor- it feels so weird, like I have watermelon for feet or something. The worst is that EVERY night I wake up at around 3 AM, and my feet are HORRIBLY itchy and irritated, so itchy
Hi,
I have just read all your messages and i am releived, if you know what I mean, that my sister is not the rare case the doctors keep telling her she is.
My sister has had HSP for the last 8 weeks and its showing no signs of going either. She was in hospital for 3 weeks with regular visits every couple of days once discharged. At the moment she currently has her 5th flare up, with the horrible purple rash on her ankles and legs. Her feet, ankles and lower legs are so severly swallon and she is in so much pain. The new rash thats coming out on the back of both ankles just burns and the apin killers she has been given dont touch the pain at all. The doctors are currentlt bringing her down from the steriods she is taking because they are not doing anything and they may give her some other medication in 4 weeks time that may help with the pain and swelling but will leave her infertile. She is currnetly staying with my parents as she has 2 children aged 3 & 4 and she is still unable to walk on her swallon feet. She was under the physio dept at the hospital but they cant help as her feet and ankles are to swallon to work with.
Have any of you had a miracle cure or do you know how we can help her with the pain or the swelling. Any advise will be great. Deb. xx
sorry to hear about your condition...
i just hope mine will not go this extreme. please read my post and symptoms. may be you can help me now...
Hi Everyone
I am 22 years old and got diagnosed with HSP 9 weeks ago. It started off with a few spots on my leg which i thought was probably an allergic reaction to something so i thought nothing of it. Over the next few days the rash spread and got worse and my ankles began to swell. I went to the doctor and she looked at me blankly having no idea what was wrong with me. The next day i got much worse and went to my local A&E, the doctor checked me over and said I had vasculitis and it would get better on its own. At this point my feet were swollen and i was finding if difficult to walk. I got worse after this appointment and went to stay with my mum. She took me to another hospital where they admitted me for the night. Some of the spots on my ankles and feet ruptured into blisters as did some on my legs. My feet and ankles swelled and i couldnt put my toes on the floor. My knees swelled too as did my elbow and my fingers. I got told i would have this for about 4 weeks and they placed me on steroids. The blisters got worse and i was in alot of pain with only sleeping for 4 hours a night. I am a student in my final year of university and i have had to leave my course because it is based on attendance and i have had to be on bed rest as I got swelling and felt exhausted if i as much as made myself a sandwich! Due to having to leave uni i have to move out of my student house too and im devastated i wont be graduating with my friends. I am still on steroids and antibiotics now but i am much better, i can walk around and do alot more then i could. However everytime I do any kind of activity such as walking around to much i get an attack of the spots on my feet, legs and arms. The blisters have all burst now, but i have massive indented scabs on my feet which are definately going to scar. I just dont know how long this is going to last. It is nice to read these posts and know i am not alone with my experiences and it shows that the \"specialists\" have no idea what they are talking about. They have no idea why i am still getting the spots and dont no how to help me. I just want to get my normal life back now, this has been so lonely and isolating and very stressful, i wouldnt wish this on anyone. I hope you all get better soon
hi wow its actually nice to be able to type again,and to know that im not the only 1 suffering this illness!i got diagnosed with hsp in june last year,and after numerous tests,kidney,liver etc,was put on steriods. 1 day i was takin my children to the dentist when i felt pain in my foot,which by the time id left dentist was rather painful.i remember thinking to myself 'have i hit my foot on somthing?',but i knew i hadnt.byt the time nighttime came id developed the rash on my arms and feet and also my foot was the size of balloon!off the docs we went who sent me straight into hospital,where after tests confirmed hsp.what followed next was and still is a long hard battle.my joints seized up,my hands legs feet ,i physically culdnt eat had to be fed etc.this lasted nearly a month.eventually the spots went,kidneys back to normal...but this has left me like a cripple.litterally!where i once was a healthy normal 32 year old..i am now a 33 year old in a 100 year olds body!i have very limited mobility,i am still on the steriods 8 months later plus methtrate.i see neurology evry 2 weeks .i look back now and think..omg..and i often wonder if this is goin to end.when will i be back to 'normal'?.anyone suffering this illness or others who look at you when your in the wheelchair because u have limited mobility really shouldnt judge or take a light view of this.
I am a 58 year old woman and I had HSP 9 years ago and have made a good recovery. I was treated with Prednisolone and on it for 5 months. My condition started Christmas eve I had the symptoms, swollen legs, ankles wrists, rash on my legs, I couldnt put pressure on my feet. I couldn’t hold anything for weeks as my hands were so painful, I couldn’t walk also for weeks. I had 3 emergency doctors at my house and they didn’t have a clue but worst of all didn’t think it was serious. I had black bowel movements which indicated internal bleeding and still they didn’t think it was serious enough to take me to hospital. When I did eventually agree to go to hospital, as I thought that if it had been serious the doctors would have told me to go to hospital I was discharged New Years Eve, the reason I can only assume was to empty the wards as I was exactly the same as I was when I was admitted I could hardly move and just wanted to sleep all day and all night and they still didnt have a clue but still discharged me. I then was persuaded by my family to go back January 3 as I was getting worse and I hadnt eaten or had any water to drink any water since Boxing day. It took the doctors 4 days to work out what was wrong as they hadn’t seen this in women before. I had a few recurrences when I was in hospital. I was off work for 5 months and still very weak even after 8 months. It took years before I felt an improvement, don’t think I will feel healthy again but I have age against me. I went for checks every year and the results were good. I have been left with painful feet and hands, and cant stand for long as my feet ache. I tried searching the internet for info on adults with HSP when I got it and couldn’t find anything. The doctors don’t know if it will come back, but seems I got off lightly compared to you. I do hope you improve, have you been treated with steroids?
Hi guys! Another hsp sufferer here. Quick rundown of circumstances; now 40, diagnosed in 1997. Had joint and stomach issues for years previous to diagnosis, pancreatitis etc. Never had any luck with diagnosis until gp friend in London emailed me pics of the rash. At the time I was bed bound, couldn't put my feet to the floor, joint swollen beyond belief and covered in a rash from my bum to my toes. Couldn't eat or drink, only sips of water. Slept constantly and had horrendous stomach pain right side. Peeing blood and protein.
Eventually diagnosed by Darren Seukeran and under the care of Prof CoveSmith at James Cooke hospital in middlesborough. Was at the time doing my nurse training, forced to take a year out and held off my studies so graduated (in the end) a year later than expected but I was adamant I would not let hsp win!
Now, 40 with one son after being told to hold off having children because of the kidney involvement. My son is 9, and he too is now under the specialist because of proteinurea. I am left either scars, chronic kidney disease and horrendous joint pain. Because my kidneys dont function properly I have gout (at 40!!) Which is unbelievably painful.
I have high blood pressure and was very poorly after an emergency section with my little boy. It's taken me years to get where I am now, but SO sick of being told will grow out of it!!!! I started with problems when I was 10, so in 30 years I haven't grown out of it can't see me doing it now!
Would love to talk to others as it's a very isolating condition especially as so few know anything about it.
Emma x
Hi,
I'm a 26 year old female with what is probably HSP - the closest I've got to a diagnosis is a rheumatologoist saying 'it looks like a HSP type vasculitis'. I thought I'd share my experiences so far.
I first noticed the rash on my legs in Oct 2010 and its appearance conincided with me having a cold. I went to the GP several times over the next few months but was met with much disinterest. One of the doctors told me to wear trousers if I didn't like the rash! The rash came and went repeatedly but I had no other symptoms. I felt silly continuing to go to the doctor so I put up with the rash and just hid my legs.
Several months later I had visible blood in my urine and returned to the doctor. They did blood and urine tests and this time referred me to a nephrologist. I had blood and protein in my urine but all my others test results were normal. When I went to the nephrologist the rash wasn't present and although I took photos the doctor wasn't very interested in connecting the two. I was told to have six monthly blood/urine tests and only go back to the kidney people if my tests were outside a particular range.
Over the next six months the rash continued to come and go but it never went beyond my legs. It was made worse by alcohol. Then it started to get less obvious and eventually stopped about 18 months after it started. I thought that was the end and I remained rash free for about a year.
But now it is back.
The rash returned in mid January and I suspect was bought on by stress (I had a bad few weeks moving house and facing redundancy). This time it was much worse, in amount, size and appearance, and I had abdominal pain too. Then my ankles got swollen and I could barely walk. I had a skin biopsy done but it didn't show anything useful.
The rash continued to get worse and new flare ups were caused by any exertion (even going up a flight of stairs). The rash spread to my arms and hands and because I wasn't achieving much at the GP I took myself to A&E. I was admitted to a ward and had tests done. Again, apart from the blood and protein in the urine, everything was normal. However, the amount of blood and protein in my urine had increased. They put me on 40mg prednisolone to try and get the rash under control. By chance the consultant on call was a rheumatologist and I got an appointment with him for two weeks later.
The steroids did initially seem to reduce new flare ups of the rash although they did not stop it. I'm reducing the dose by 5mg a week and the rash seems to be ramping up again now I am on 30mg. Unfortunately I have a two month wait until my next appointment and I'm really worried I'll soon be covered in the rash again. My legs are easy to hide but my arms and hands are causing a problem and I'm dreading the rash spreading to my face.
I am able to control my abdominal pain by not drinking alcohol and I don't have any other symptoms so I know I am in a far better state than a lot of other people. But it is horrible not having a definitive answer and not knowing when/if I will get better. I was active before this flare up but now do as little as possible so as to reduce rash flare ups.
Has anyone else experienced steroids not doing much? The rheumatologist seemed surprised they were having so little effect.
I've read several comments on how HSP might be linked to the contraceptive pill. I've been on one or another since I was about 17 and am wondering if changing it last October could have led to this new flare. I'm doubtful because of the three months in between but maybe hormores take that long to settle? I will be asking my GP for details on when I changed between the different pills and see if I can find a link with the first occurance.
Any similar stories or advice on reducing the rash would be appreciated!
Katherine
Im a 37 yr old female with HSP, I was diagnosed in 2001, i had all the symptoms, severe doubled over abdominal pain, rash on my legs and arthritis in all my joints forcing me to use a cane for 6 months because the pain in my ankles and knees were so bad i couldnt put much weight on them. they diagnosed me with HSP after a kidney biopsies. because it affected my kidneys they had a kidney doc follow me to this day. its great to have a doctor that knows your case and the disease to treat you because im sick of having regular or all other doctors ask me what HSP is. I end up educating them on it and that doesnt help me out at all. After being severely sick with the kidney failure my disease became very aggressive so they put me on a 2 year chemo therapy treatment program. they did this because HSP is a severe cousin to Lupus, its the same symptoms so they treated it the way they would Lupus with Chemo. The treatment was so harsh on my body i quit Chemo after 4 months and i stopped taking the steriods too because it was affecting me so badly! i also was told to take fish oil for my kidneys which also has the benefit of giving you great levels in your cholesterol, my good cholesterol is 90 when the normal is 60 so the fish oil i still take. I have been told by all doctors that there isnt a cure and they only thing they can do is pain management thru the hospital with morphine.Thats to hard on my body so i smoke marijuana and that helps all my symptoms and its all natural verses the chemicals in pain meds. Ive had this disease for over ten years now and it was in remission for many years but my arthritis is still here on the cold days and recently ive been very sick since December and were doing all kinds of tests to see whats wrong, EGD, colonoscopy, blood work and its my hsp thats causing this sickness. its very disheartening to know this disease will always be with me and affect my daily life. Im disabled unable to work because of this. this is the first time ive found a group of adults that have this same disease and its great to be able to have peoples support that knwo my pain with this.
Hi my name is Debbie I am 33, I have been suffering from hsp since I was 8 months, when it 1st. Appeard the doctors did not no what it was this resulting in me being taken in to care for over a year I was returned with no apology. When I was 7 hsp returned the rash was all over my legs and the pain was that bad I couldn't walk and it had spread to my stomach is was hospitalised for two months. I have ever since came out in hsp every couple of years until 3 years ago it has been appearing every couple of weeks my stomach pains have been increasingly getting worse, the doctors and hospital have no explanation and to be honest they still don't no much about it and I feel I am not been taken seriously my biopsy results showd inflammation of the blood vessels but not conclusive I am back up to hospital this month, this condition has and still is causing a great deal of pain and embarrassment with the rashes I hope there is a cure for this. Thankyou for taking the time to read this and look faward to any feed back. Debbie x
I am 62, and was told I had hsp about 9 years ago. I had had a cold that I could not shake for a long period of time, than started hurting all over, and right after broke out all over my legs. My GP doctor didn't seem to know what it was, and I did research myself and figured that it was some kind of vasculitis and when to a dermatologist and got a biopsy, and he than sent me to an internist thinking himself that is was hsp, and he sent me to a Rheumatologist. I constant blood work, etc. and he put me on various suppressant drugs, most I was allergic to and got sick. He ended up having me on celcept and prednisone, The cellcept start marking me feel bad, so I went off of it too, than a little later was able to go off the prednisone too. I have had off lite breakouts for the last few years, although still have a lot of joint pain, leg swelling, and times of just not feeling well, until this last week when I broke out more than I had in a very long time. But than this is after I had had a very hard day that never seemed to end, and was sick the next day. I haven't seen a doctor in over 5 years for it, so have no idea where my kidneys, etc. stand right now, as when I was having trouble before, I did at time have blood and protein in my urine. I was hoping the hsp was going away, since it had been a while since having a breakouts, and was thinking maybe the arthritis problems was just old age, but I didn't have arthritis before all of this. Now every joint in my body hurts, and sometimes my feet hurt so much it is hard to walk. I am a dog groomer and work with horses, so it isn't like I am normally inactive. I love working with my horses.
So, about a month ago, I posted a summary of my wife's situation (in a different HSP thread) after she was admitted to the hospital and doctor's couldn't figure out exactly what was wrong. Long story short... she had been diagnosed with HSP about 8 years ago. There were clear signs of other consequences of the HSP such as protein in the urine, IGA deposits, etc. but none of this was ever brought to her attention. Signs began to appear as her blood pressure increased, headaches became common, dramatic weight loss occurred, and fatigue came on. This all began to make sense as doctors looked back at the old records from when she had HSP. From there, they determined that her kidney's were severely damaged and was diagnosed with end stage renal disease (aka Stage 4-5 Kidney Disease). They have already taken steps to get her on a transplant donation list and plan to perform the transplant sometime this year. I share this story in hopes that no one else has to go through this. It all could have been prevented/stalled had doctors done their due diligence and warned her of her very real danger of developed chronic kidney disease. I would encourage anyone with HSP to purchase a blood pressure test kit (very inexpensive) and test yourself often. Think twice about having children. If you do have children and are told in your third trimester that you have pre-esclempsia, be warned that this could be an HSP flare up.
So, about a month ago, I posted a summary of my wife's situation (in a different HSP thread) after she was admitted to the hospital and doctor's couldn't figure out exactly what was wrong. Long story short... she had been diagnosed with HSP about 8 years ago. There were clear signs of other consequences of the HSP such as prot
Well, I guess I should start out by saying that I'm a 38 year old American man. I was just diagnosed with what the doctors here call IgA Vasculitis. I'm really just hoping and praying for some kind of information about HSP/IgA vasculitis. I was diagnosed in mid October and was hospitilized for 5 days. I'm currently on Prednisone. This is my 2nd week on it. They also have me taking Gabapentin for the pain. It's not working. Does the pain ever get any better? I can hardly walk. I have ulcerated sores from my knees to the soles of my feet. I did have trace amounts of blood in my urine at the hospital. I don't know if there is any now that I am at home. The tiny red spots started over 6 weeks ago. How long can I expect this to take to heal completely? I am the sole provider for my family (married with 4 children!) Is there any treatment you have there that helps? Oh and on top of the HSP I also am a diabetic and have Hidradentis Suppurativa. And the steroids are making my blood glucose extremely high.
Oh and the doctors also have me taking Dapsone.