Henoch Schonlein Purpura in Adults?

So just an update, my holiday went well and my rash and condition was the best it's ever been, it came back pretty quickly afterwards though.

At my next hospital appointment, I told my doctors that I was upset with the rash, and was unhappy with the way it made me look and feel about myself.

They prescribed me a short course of steroids (prednisolone) I was told to take 6 a day (30mg) until the rash had gone and then reduce my intake by 5mg every week afterwards. I'm currently taking 6 pills a day and the rash on my upper body has gone competely! As well as all the side effects with it, I never swell up and my abdominal pain has stopped too.

My legs were so bad it appears that they have scarred with trapped broken blood vessells or something and it looks like a lot of bruising, but in comparison to what they were like before I could not be happier.

My only fear is that when I go off the steroids I will go back to normal especially when I drink alcohol, and as a 19 year old it's pretty sad to go out and not be able to drink.

Has anyone had this experience with the medication?

All the best to you all,

Zoe x

Hi Zoe

My son suffered with Henoch when he started in the 6th form at 17.(He is now 33) He experienced all the same symptoms and embarrasements as you and it took us 7 doctors until he was accurately diagnosed. Few even knew what it was. That was 16 years ago. He suffered on and off through uni and on until he was about 25 (although less frequently) and then it slowly diminished. He has however, been carefully monitored at Guys hospital (annually and now more regularly) and it has transpired that he has some kidney damage. I would suggest that you ensure that the doctors treating you are monitoring your kidney function regularly which did not happen all those years ago. You seem to be getting much better help than he did. He is, otherwise enjoying a normal life but he does look at his diet and drinks moderately. I didn't want to cause you any alarm but felt it was important to say the negatives as well as the positives. I suggest you look at all the information online as well. There is far more research going on which will help you further. Don't get disheartened the symptoms will get less.

I I hope this has helped in some small way.

Margwen

Hi everyone,

I am 19 years old and have literally just been diagnosed with HSP three days ago. This is after suffering with it for four years. Finally I was taken seriously when I visited a rheumatologist.

I am so relieved to see that I'm not alone in this. For me the rash covers my legs but is more concentrated around my ankles. My symptoms have worsened this year however, and since May the rash has been constant and is now around my elbows. When I have a bad flare up, the pain is not only in my knees and elbows but it attacks my shoulders, wrists, fingers and ankles as well.

Since my first bout in 2008 (15 years old) I have had constant hypersensitivity in my arms and legs. Does anyone else suffer with this? Literally if I hit my arm or leg gently off something I am in crippling pain. It has become a bit of a joke among my friends now and I feel like an absolute hypochondriac.

I would appreciate any feedback anybody has on this as this diagnosis is all very new to me!

Thank you,

Bethany x

Hey Zoe,

I'm also a 19-year-old suffering from HSP and was diagnosed when I was 15. I started seeing symptoms and assumed it was razor-burn until I started seeing spots on my feet. Luckily, the spots only appear on my legs so I feel so terrible for you. I just arrived in Aruba with my family after a particularly bad outbreak of HSP and, once we were done traveling, my ankles and feet started to swell. It was so painful I could barely walk. This disease, while it could be worse, is awful. I frequently refer to myself as a freak because it looks so ugly and I feel extremely self-conscious of my appearance because I am afraid people think it's contagious. It's really re-assuring to know I'm not alone though, because no one understands what it's like and knows what my problem is. I don't understand why doctors have no idea how to fix it and claim that it only lasts "up to six weeks". I hope they can figure it out for us though.

Thanks so much,

Jordan

Hi Bethany and Jordan,

I feel a lot better after finding people my age with this problem, as I felt completely alone, nobody who I knew had this problem, or when someone knew somebody they were normally children of about 5 years old and ssaid it left after 3 weeks.

When I last visited my hospital, they told me it's not normal to have had the rash for so long at my age, and despite having little kidney problems they prescribed me a 6 week course of corticosteroids, Prednisolone. My rash left immediately and I have had no problems since, besides the side effects of the steroids. My rash has gone, I am never swollen or in pain.

I definitely you go to your doctor and mention this, because I am so unbelievably grateful for what it has done to me. I would not have been able to have coped as long as both of you have done.

I understand what you are going through, because I spent many a night in tears because of how ugly and alone I felt. If you ever need a friendly person, I am able to be that ear. My email is xxx, I am available at any time of the day, because I know how isolating it is, because no one else knows what it's like, I remember thinking "if anyone dares say it'll be over soon, there's worse things to happen to people, I am going to scream"

All the best to both of you.

Zoe

EMIS Moderator comment: I removed the email address as we do not publish these. You can talk directly or pass details on by using the messaging service.

Hi all,

I'm 40 years old male from Finland and I was diagnosed with HSP about 10 months ago (although rash appeared way long before that). My symptoms are quite normal, "fortunately" I'm having only rash and kidney issues. I had my renal biopsy done couple of weeks ago, and now I'm waiting for the results. With my luck I'm just not sure if I want to hear the results...

Anyway, about this god damn rash. I don't know why doctors keep telling me it will last only a month or two months max. Well, my rash started about 18 months ago, it appears without any sensible reason, and goes away in a week or so. This happens probably once in two months, sometimes more often. And if it were only in my ankles and lower legs, I probably wouldn't mind so much. But I have rash in my ankles, lower legs, thighs, forearms and even in the back of my hands sometimes!

And I'm mostly pissed off because of doctors' attitudes here in Finland. They just say to cheer up, it's just cosmetic issue. What!?!? I'm having kidney issues, and I'm pretty sure those red spots aren't very healthy sign either, something is really happening in my blood vessels. And like ZBee mentioned, I'm starting to think that docs just don't know anything about this disease, they are just guessing.

Symptoms seems to get worse if I have lot of stress (like today) or if I drink alcohol (I'm not much of a drinker, so this is just a wild guess). Otherwise no idea what triggers the rash. That's why I'm quite desperate nowadays, and starting to believe I'll have this disease with rashes the rest of my life. It would be a big relief if I could only know when the rash appears and why, but that seems to be too much to ask.

Sorry about the tone of this message, I just got rash today and my pulse is not even close normal yet.

But all the best to all of you with this same condition. It's not a death sentence, but still very frustrating disease to suffer.

P.S. Sorry for my English, might be a bit rusty...

RM

Dear All

I am so glad that there are now forums for people to support and offer others advice. I am hoping that my story will bring hope to some of you.

I was diagnosed with HSP in 1990 following a bout of tonsillitis. I had the rash all over my legs and on bad days it would be on my hands and arms. I was admitted to hospital for two weeks as a result of blood coming out of both ends!! Like some of you I could hardly walk some days as my joints were so painful I was barely able to stand. If I went out with friends it was on a Friday so that I had the weekend to 'recover' from what my mother once described as looking like hot fat being splashed across my legs.

Over the course of 7 years, I saw numerous 'consultants', months of steroids and had loads of blood work done and still nobody could tell me why I was getting the symptoms as everything was 'normal'. Every weekend when I was out doing things with friends and family I would get the rash and the aching joints. Typically, my appointments were always on a Wednesday or Thursday so the consultants never saw the rash at its worst - only the scarring that was left. Sometimes I even wondered whether they believed me.

However, during this time, I kept on getting tonsillitis. Never bad enough for the doctors to remove them, but every couple of months or so it would flair up.

On January 1 1997 I woke to find that both tonsils had develped a quinsy (or abscess). As soon as the doctor saw them he said that they had to be removed. On Feb 19 I had them removed. For two weeks I had the typical HSP symptoms due to infection. Once I got over the infection, the HSP symptoms disappeared and I have NEVER had a single symptom of HSP since.

The consultants agreed that my HSP must have been linked to the tonsillitis, so if you have a recurring infection get it checked out.

I am very lucky in that no serious damage was done and the scarring to my legs disappeared after a few months of being HSP free.

I hope my story helps as I know how miserable and painful HSP can be and that there can be light at the end of what seems to be a very dark and lonely tunnel.

Take care all

x

xx

Hi All,

I'll be 37 this month and am two months into my second bout of HSP.

In Fall 2011 I had a really bad upper respiratory infection and had missed a couple of days of work. About two weeks later my legs began to swell horribly and I had a rash. I went to my GP, but she just told me to put a steroid cream on it. Things progressed within 24 hours and I went to the emergency room. The doc said it was HSP, but had no suggestions other than to rest.

Well, my doctor called me that week and asked me to come have my urine checked (there was blood) and then they did a skin biopsy just to be sure and that came back as HSP. I was told it would take about 3-4 weeks to clear up and at that time I remember feeling so overwhelmed because WOW did that seem like a long time. Little did I know, 3-4 weeks would have been dreamy compared to having it for 3-4 months. I really feel for you long timers.

My symptoms the first time were joint pain (knees, toes, ankle, fingers), horrible rash, burning skin, extreme fatigue (I fell asleep in my parked car at work and the police came- how wonderful!). I never had stomach pain or problems the first time. Eventually everything cleared up and I was left with two very scarred, pocky looking legs. I did have blood in my urine and four urinary tract infections over several months and went to a specialist (urologist), but they found nothing wrong with my kidneys.

So, a few days before Christmas I was planning on going to a party and felt the familiar burning. I went into the bathroom and looked at my legs and they were completely broken out. No party for me. I knew standing for hours on end would be begging for trouble. So I went home and rested over Christmas break, mainly wearing my slippers everywhere I went because all of my other shoes (minues one pair of boots and a pair of sneakers) made the rash and swelling severe.

In mid-January I was back to teaching (luckily teaching at a college affords me long breaks so I can rest up), and the rash and swelling had become a little worse. From wearing shoes, I now have a huge sore on the inside of my ankle and it's infected (I bet if I taught at the liberal Berkeley I'd be allowed to wear my slippers to teach!). I'm waiting to find out if the bone is infected, too. I should get the xray results back tomorrow.

This time I have the same symptoms, but less fatigue and some mild stomach issues. The rashes don't seem to be as severe and are now starting to thin out a big. I'm going to see a specialist tomorrow, so I hope that I can get some insight. I'm not hopeful, though because it seems that there's a lack of awareness and knowledge about HSP.

My immediate family has been so supportive and I feel incredibly lucky in that regard. For the most part, my other relatives and friends are very evasive and quickly change the subject when I try to talk about it at all. That part for me has been pretty eye opening.

Anyway, that's my story. I appreciate reading all of your stories. Healing thoughts to you.

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

Hi Katherine - it sounds like you're having a horrible time with it bless you.

I had my first flare up five years ago and had similar experiences to you in that the doctors just found it 'weird' rather than trying to do anything to help me. Luckily this time my flare up started (may 2012) I was taken seriously and referred straight to a rheumatologist. Since then, he has taken pretty much every test and had confirmed it as HSP. From your symptoms I definitely think you have it too.

My first flare up was after a cold too, but my flare up last year started after having vaccinations prior to a trip to Uganda. I've found nothing to really calm the rash (except limiting alcohol intake which you've already discovered). I've even brought myself off the contraceptive pill to see if that reduces the symptoms but I've had no such luck unfortunately.

On Monday I am scheduled for a kidney biopsy after months of kidney pain and blood and protein in my urine. I have officially been diagnosed with CKD-stage 1 as a result of HSP. In my case I tend to use the severity of the rash as an indicator for the severity of inflammation in my kidneys.

After speaking to my doctor and asking him what I can do to reduce the symptoms, he's literally said nothing. Apparently there is a small (and very tenuous) link between improved symptoms and taking glucosamine supplements. So far I have noticed no difference but I suppose everything's worth a try

I know exactly what you're going through and know just how frustrating it is so feel free to message me if you need to!

Bethany x

Hi Everyone,

It's so nice that there's a place to finally talk about HSP because a lot of people don't understand it and what we go through.

I'm a 32 year old female in Canada and currently going through my first bout of this in 3 years.

Unlike most of you I was diagnosed with HSP at age 6. I had continual outbreaks of it (especially when I got upset and was crying or if I had any kind of trauma to my body like getting hit in the thigh with a soccer ball). When I was a child my symptoms were the rash and (it would welted up at night) and sore ankles. I had the rash mostly on my legs, stomach and buttocks, but occasionally I would have them on my arms. Kids can be so cruel, I was taunted about having leprosy, aids, any kind of nasty disease that they could think of accusing me of having.

This was a repeat appearance of about 2 months at a time. I went for test after test and there was never any treatment for it other than to put my legs up at the end of the day. I was able to live a fairly normal life. When I was 10 I was hospitalized and out of school for 2 months as the vasculitis affected some of my internal organs (I'm not sure which I was never fully informed). Fortunately I recovered. The doctors kept saying that it was a childhood ailment and that I would grow out of it. By the time I reached 13 years of age I stopped having outbreaks of it and I was very relieved.

Then fast forward to 2010, I'm 29 years old and all of a sudden I break out. I went to see my doctor right away but there was nothing we could do about it. In the past it would just go away on its own. Not this time. My legs swelled up and hurt beyond belief and the rash was more intense than I'd ever had it before. My legs were hot to the touch and the spots started to blister and now I'm left with scars on my lower legs from those blisters (they look like burn scars). With this episode they finally put me on prednisone to bring down the inflammation and I also had to take percocets in order to deal with the pain. It took almost 3 months for this to resolve itself.

Three years later in March of 2013 I broke out again. No trigger or anything, I'm, not sure why it happened. But the spots themselves are painful. I can't wear jeans or snug pants or socks. Everything has to be loose otherwise I break out. Even rolling over in bed is agony b/c the sheet rubs at my legs. I've currently been off work 2 weeks because of this and I was all set to go back today but 2 days ago I went out to my grandmother's house for her birthday. I was standing for maybe 90 minutes when the rash started appearing again and my ankles swelled up. I'm currently taking prednisone (I'm tapering my dose down now from 40mg/day) and tylenol #3 for the pain. I also find that ice helps with the pain and itchiness. I'm finding that staying off my feet (having them elevated) and not going out (I feel like a shut in, Cabin Fever anyone?) reduces the rash and swelling in my ankles greatly. When I do go out it has to be for short periods of time with very little walking or standing on my feet. For example I was able to take a cab to the medical lab to get my bloodwork done, get a pedicure at the place next door, pop into to drugstore take a cab home and then go to a pub with a friend that same night. If anything I had less than a dozen new spots from my activity that day. But standing for 90 minutes at a bday party (when I had had no new spots for 3 days) 4 days later I get a full on breakout.

I'm curious if anyone else is suffering from pain from the spots themselves or has difficulty in the kinds of clothes you can wear because of the rash. I haven't had any abdominal pain or arthritic pain with this bout of it either.

I also find the information about the birth control pill interesting. I've been taking the pill since I was 14 (issues with painful cramps) and the only times since I was a child when I've broken out in the rash is when I've been off the pill.

Thanks for reading, I feel for all of you!

Lisa

Hi Kat,

Im a 26 year old male from australia.

My case is a little different.

I was diagnosed with HLB 27 which is a gene for Arthritis when i was 18 which consist mainly swells up my ankle and hips.

Fast forward 5 years later i started to get some red dots on my lower leg. Didnt think much of it as it only occured when i was standing 7-8 hour a day when working during the weekend. Also it only happened during the winter part of that year.

2 years later i decided to speak to my doctor about it and he didnt have much of an idea but i had signs of blood in my urine. So he promptly got me to see a kidney specialist.

During this time i have noticed the red dots appearing behind my arm sometimes. The dots will normally disappear within 3-5 days but then will occur again the next week or so. So its very on and off.

The specialist got me to do akidney biopsy which to check my kidneys. Turns out that my kidneys are leaking or have higher than usual IgA deposits.

Anyways he prescibed me some predisone which didnt really help as my rash would be heal on its own every few days and come back again.

I do notice it happens worst when wearing jeans and during winter. Also when going out at night doing lots of walking.

For me its just cosmetic so far. I think my body is use to the swelling of ankle etc from my Arthritis gene that is why i dont get much or any swelling when i get the rash.

hi everyone, i suffered with hsp as a child, making me wheelchair bound for long periods at a time, we were told that you only get this disease once in your life time, i had it three years in a row, this disease is caused by your own immune system attacking itself but its usually triggered by another illness you have, mine was triggered of by my tonsils i eventually had my tonsils removed and the disease never came back, i have still however suffered with arthritis in the knees from the age of 16, other than that have been quite healthy i am now early fortys, and at the moment have started to suffer with other health problems again its looking like its related to my own immune system, i wish everyone on here a speedy recovery of this disease, best wishes to everyone

My wife (Age 28) was sent to the ER (on 05/09/13) after a regular OB visit. There, the routine BP screen showed her at 220/130. Still in the hospital today, doctor's cannot determine a diagnosis and have been unable to get her Systolic steadily under 170 with meds. It's been in the range of 175-185 today. Her Diastolic has ranged from 70-100 today.

Knowns based on what Dr's have told us:

-There is kidney damage, Dr's advised the kidney is functioning at 1/3 of what it should be ("creatinine rating of 3")

-leakage in valve to heart

-"flattened" vessel in brain

-Consistently HBP

-Dr's are thinking maybe it's IGA or Glomerulonephritis

Symptoms pre-hospital admission:

-bad headaches during last 3 months, especially the week before her period.

-Abnormally Increased PMS symptoms (moodiness, etc), dizziness, tiredness, decreased appetite

-Lost 30 lbs in last 6 months w/o trying/dieting/etc

-Was diagnosed with HSP (Henoch Sconlein Purpura) in 2005 and fully recovered, no relapses or recognizable symptoms since

-Gave birth in 2007 and 2010. Both times, she was induced into labor after being diagnosed with preeclampsia. Both children born healthy.

Would greatly appreciate any feedback.