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ZBee ZBee

Henoch Schonlein Purpura in Adults?

Hi,

I'm currently a 19 year old female student in my 2nd year of my degree, during March 2012, I was diagnosed with Henoch Schonlein Purpura (HSP) after being sent to hospital with meningitis like symptoms. You can imagine the relief, when I found it it was not in fact meningitis. The symptoms of HSP (Rash, Swelling and Abdominal Pain) however, have interfered in my life a great deal, leaving me having to take a lot of time off work and my studies, which actually resulted in me being very ill for my end of year exams. Fortunately, I still managed to pass my first year at university.

These symptoms are causing a great stress in my life, and continuous hospital appoints are a constant pain.

As a 19 year old female, my appearance is very important to me, and I am struggling to keep a 'positive' face when I have to constantly cover up from my neck down, otherwise I am bombarded with questions and looks as though I am a freak of nature, on more than several occasions I have been very upset with this illness.

During my visits to the hospital, despite my kidneys being priority there (thankfully, they are still functioning fairly normal with little blood in my urine) the rash itself is one of my biggest problems.

I have been trying to find people in recent times with the same condition, but am struggling to do so, many discussion forums tend to be around the time of 2008, many of adults complaining that despite being told the symptoms would leave after 4 weeks, have been left with this illness permanently. This has brought me down even more, to discover that no one has been able to share their story of recovering from this frustrating illness.

I was hoping that by me bringing this up, hopefully someone with the same problem as me would be able to shed some light on to this, as doctors seem to be just as useless and clueless as me. I am in no position to say that this is the worst thing to ever happen, as I know others have it a lot worse, but I simply could not imagine leading a 'normal' life at my current rate, as for me, walking is an incredible difficultly for me, due to my massive ankles, knees and feet.

If anyone can help me, at all I would be extremely grateful.

I am on no current treatment, besides painkillers to reduce abdominal pains, and bed rest for swelling.

Thanks in advance x

114 Replies

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  • debbieshaw debbieshaw

    Hi ZBee,

    My daughter was diagnosed with HSP at 16 years old and had repeated episodes with no help or treatment offered by NHS. She went deaf in one ear, had persistent bladder infections/ severe right kidney damage/ frequent vomiting and stomach bleeding plus the rash constantly on her legs. After 8 years of suffering she finally decided to go to university to study medical genetics, in spite of being really ill as you describe you are.

    Quite by chance she made contact with a professor who wanted to know why she was often absent and he asked her to keep a diary of her illness in case he could help. Eventually,again by chance, she stopped taking her contraceptive pill and reported feeling better.

    The professor asked her to come to his lab for blood tests as he thought he might have an answer. He took a sample of blood so he could genetically map her female hormone and it turned out hers was genetically different to most people's - this can happen in quite a high % of people. When she took the pill which contained a mainstream female hormone that differed to her own, her body attacked it as the enemy, thus producing the HSP symptoms.

    She stopped her pill altogether and feels totally normal again. It's amazing to see her return to good health. If you are taking the contraceptive pill I recommend you stop. I would say the same for any long-term medication you might be taking - with GP advice of course - give it a rest and see whether that is causing your illness.

    it seemed really obvious to us afterwards, but not at the time, that we should have ceased ALL drugs going into her body to see if that helped!

    I hope this helps you, Debbie

  • ZBee ZBee

    Hi Debbie,

    Thank you so much for your response, I am with great sympathy of the ordeal your daughter had gone through, I can imagine how stressful it was for you as a parent too, as my mum is struggling to watch me be so unwell, and yet not be able to do anything but love and care, whilst hoping for the best.

    I am extremely interested in your response, as I was put on the contraceptive pill at a young age (around 14) because I had terrible period pains. Now you mentioned this, I noticed I came off the pill not longer than 2 weeks before any symptoms of HSP came around.

    Maybe this has something to do with the HSP but in reverse affect, im not sure it would but as you said something to do with my hormones, I shall mention this to my doctor when I see them next week.

    Thank you so much for sharing this with me, this has given me a slight bit of optimism!

    All the best, Zoe x

  • MT83 MT83

    Hi Zoe,

    I am a 27 year old female and I have had HSP for nearly 5 years.

    I had been travelling around the world for a year and a half and when I came back in 2008 I started getting the rash and swollen ankles and knees. It took doctors 3 years to diagnose me and yes the constant hospital appointments were a pain but the worry was even worse. I think my experience with this condition has been worsened due to the lack of understanding from others and the lack of knowledge of doctors. If I complain to my family members who do not know what HSP is, I feel that they think I am being a hypochondriac so a lot of the time I suffer in silence and save the complaining until I get home to my boyfriend, who has been brilliant with me! No one told me that I would feel sick with this condition so I spent a lot of the time wondering what was wrong with me. Eventually my boyfriend was able to get me some information and the more I looked at the proposed symptoms the more I became aware that a lot of what was happening to me was due to HSP, which in itself was a relief.

    I get an itchy rash all over my legs once or twice a month (which generally stays for about 5-7 days) but mainly around my ankles and my feet which frustratingly means I have to be careful what I wear, especially in the summer. Like yourself, I am fashion conscious and care about my appearance and this condition has caused me many stresses to say the least. My knees are constantly swollen too. A few months back my knees and ankles swole so bad that I couldn’t walk up the stairs. I go to bed at night with a pillow under my feet to elevate my legs hoping that this will help – this might help you too. I have arthritis in my knees and constantly need to have my legs stretched out – if I am on a bus I need to stand because if my legs stay bent for too long the rash comes up and my knees swell really bad.

    In a way I am lucky that it does not go above my legs and I am sorry you have to endure that.

    I find Debbie’s email remarkable. I have been on the contraceptive pill for 8/9 years now and often thought about coming off it to see if it would help my HSP. I came off it 7 weeks ago and although my HSP has not become better or worse I feel better in myself, more energetic and brighter. I am hoping over time it will improve. I have also recently taken up the gym which could be a factor of my changed attitude towards this condition – I am determined to make the best of it, although the gym kills my knees!! ( I am not overweight so my knee pain is due to HSP and only started when the rash came out).

    My HSP comes out worse if I am on a night out, the next day I suffer badly with a deep scabby rash which lasts about a week and terribly swollen ankles and knees and abdominal pain. The worst case I ever had was 2 years ago just before I was diagnosed. I went on holiday to Greece and when I got off the 5& 1/2 hour flight I could barely walk, my holiday was ruined. With the pain I could not eat and was miserable. This year’s holiday will consist of a 2 hour flight, extra leg room on the plane and flight socks so my fingers are crossed that HSP does not spoil my holiday.

    Having diagnosed me the hospital have said that they can do nothing more and have discharged me! Although the hospital didn't offer me them I am aware that the only form of relief would be steroids but they come with awful side affects and i do not want to go down that road. So now I am left with this condition although I do recognise that I could be in a far worse situation.

    Instead of trying to cure my HSP I am trying to manage it better and I am not sure if it is just because I am used to having it but the rash break outs are becoming less frequent although the pain in my swollen knees and ankles is almost always there. I have an appointment with a rheumatologist at the end of August – hopefully they can do something about my knees but as this is my 3rd appointment and they definitely do not understand HSP, I do not hold out much hope.

    To simplify, my symptoms are –

    • Rash on legs and ankles

    • Swollen knees and ankles/joint pain

    • Arthritis in knees

    • Stomach pain and sickness

    • Headaches (Although they have become less frequent since giving up the pill)

    • Lack of energy

    Hope this helps

    Thanks

    Marie

    • Cinders68 Cinders68 MT83

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    • rocky31676 rocky31676 MT83

      Its surprising you have only lower legs rash and artritis of knees. 

      So you dont have abdominal involvement or any kidney problems ? 

      I would say that it it great, but your discussion above says that your sufferring as much with your vacation and having to ruin it, with swelling and arthritis of the knees. 

      So i hope your feeling much better than before. Do update. 

      Rocky

       

  • ZBee ZBee

    Thank you so much for your reponse Marie. I am sorry to hear that you have been suffering for so long, it's horrible isn't?

    I completely understand your leg and joint pain when joints become swollen, I also suffer from sciatica, so walking has become something of a great pain (literally). I have found my self, almost becoming used to having to explain my problem and learning to live with it, although I have my down days where I wish I could just put on a pair of shorts, without having to put on a pair of opaque tights on underneath and a long sleeved top, I know there are others out there who have it a lot worse.

    I printed off both of your responses and brought them to my doctor today. My GP is the only doctor I have seen who has really taken a proper interest in my case and is interested to learn more about it and is always optimistic of trying to get a cure for me. Like me, the hormone imbalance suggestion stood out to her as I mentioned that although my doctors have all asked if I introduced any new substances around the time of my first symptoms, they never asked me if I have removed any.

    Like I previously said I had been on the contraceptive pill (Microgynon) every since around 15 years old, and I had theorised that maybe my body was so well adjusted this additional hormone that it responded negatively when I removed it. Anyways, my doctor checked to see if I was able to go back onto the pill and I have now been prescribed to a 3 month trial. Although I have not gotten my hopes fully up I am hoping this could be the solution. I have not yet started my course of the contraceptive pill but will keep updated when I start in roughly a week or so.

    My symptoms are very similar to Marie's excluding the arthritis in knees. Although I have only ever had abdominal pains and sickness for a week or so twice. Is this the same with your case or is it as infrequent as mine?

    Thanks and all the best!

  • Rowi Rowi

    Hi there

    It is a big relief to be able to talk to someone else with this condition, as some if you have touched on being so rare in adults there is not much out there in terms of reference materials to view.

    I am a 32 year old female. In march this year I had been on a hen night and the following day woke with a severe rash on my legs and some on my elbows and wrists. I had pain in my shoulders and had been suffering with bad stomach cramps and diorrrea. My friend told me to visit the docs as the rash looked really bad, similar to meningitis.

    My doctor quickly dismissed meningitis and advised she thought HSP was to blame the following day she tested my urine and confirmed the diagnosis (blood and protein were present). I was promptly referred to a nephrologist under the NHS and on seeing him was told this often goes away on its own. Lo and behold about a month later the symptoms were still occouring, often made worse by exertion or nights out. By this time my GP had signed me off work as she wanted my body to focus on getting rid of the condition rather than focus on the stresses of work etc. On my second visit to the consultant we decided a biopsy was required to check the extent of the damage to my kidneys. It took about 6 wk for this to happen. Finally I had the biopsy, which introduced an infection and I was back in hospital the following week for three days waiting for a scan to check for bleeding. In the mean time I was given intravenous antibiotics to clear the infection. After the biopsy I have felt lots of kidney pain, and after 3 weeks was starting to see a lot more blood I the urine.

    I decided to go private as the result of the biopsy was taking way too long it was goin to be September before I could see the consultant again. I have now gone private and things are moving. I have had the biopsy result which showed severe inflammation in my kidney. The consultant has now decided on an aggressive 6 month treatment plan. Today I am starting on prednislone (a steroid to reduce the inflammation), mycophenolate (used to treat auto immune conditions), and alendronic acid and lansoprosol (to help with the side effects). My consultant has advised although he is hopeful this will help with the kidney damage he cannot say how this will affect the long term condition - but he is hopeful we will see improvement. I am very scared about the side effects and upset we have been advised for the next 6-12 months a second baby is out of the question, especially since all baby plans were put on hold for this condition. There just does not seem to be a clear end point. I am hoping that I can return to work if the side effects are manageable.

    I really feel for all of you here, this is a horrible condition. Compared to some on here it seems I have had an easy ride so far as I was diagnosed very quickly it seems. It doesn't make it any easier however. Only this weekend after attending a wedding and even been sat down for some of the day the rash was all down my legs and arms, my ankles hurt to touch for three days, even my watch had made the rash appear on my wrists and it is t even tight. Like most it seems bare legs are out of the question, maxi dresses a must. Toilets need to be very close by and painkillers on hand at all times.

    Hopefully now there is a distant light at the end of the tunnel However dimmed.

    I wish you all the best of luck in your diagnosis and treatment. Please continue to post any updates, so hopefully we can all share our progress.

    • Cinders68 Cinders68 Rowi

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    • Cinders68 Cinders68 Rowi

      Hi Rowi, so sorry to hear you have HSP.

      My daughter's HSP started last September. She was hospitalised for 10 weeks. She was constantly vomiting. She has and still has +4blood and protein in her Urine. She was prescribed the same drugs as you but was always told they were trial and error as they had no idea if they would work. To cut a long story short, my 14 year olds HSP was triggered by a sudden allergic reaction to yeast and yeast extract products. She has now been drug free since February, vomit free since end of march 2016 and on the 15th will finally have a food allergy test at a lo London hospital. The doctors did loads of tests while we were in Oxford but were unable to find the cause of the vomiting as were two other hospitals. Thank god for parents. HSP is like cancer, find the trigger and you can put it back to sleep. Since march my daughter has had no symptoms only the problems from the drugs which will take years to leave her!

  • MT83 MT83

    Hi Zoe, Yes having to explain what is wrong with me is a constant nightmare and can get very embarrassing. I am so delighted for you that you have a doctor who is willing to listen and is taking an interest, my consultant couldn’t wait to get me off the NHS register and practically shoved me out the door! Hopefully the rheumatologist will have bigger ears and will be willing to give me advice on HSP. For your own theories, I also stopped the pill a month before I came back from travelling because I ran out of it and was in America with no immediate access to a doctor so there could be a connection with me there also. I had been on Yasmin for 5 years before I came off it temporarily and then 6-8 weeks later my HSP came up for the first time. At the time I didn’t make the connection but this could have been a factor but probably one that I will never be able to prove. I went back on the pill shortly after coming back from travelling and have just come off it again. In my case the sickness is quite regular and it was a running joke with my boyfriend that I always felt sick until we found out the side affects of having HSP and he ate his words!! Yes the sickness is a nightmare but I have now taken chocolate out of my diet as well crisps and sweet things to see if that will help. Because there is very little knowledge of HSP I have often wondered do certain foods irritate the side affects? May just be me but I am giving it a go anyway.

    Hi Rowi,

    Thanks for sharing your experiences. Yours is an interesting side of HSP for me as you are about to take steroids – I am very interested in your progression with these and I hope they do the trick. You seem to be a lot worse off – I get the rash on my legs right up to the top of my thighs but you even get yours on your arms and you have kidney issues. I haven’t had problems with my kidneys yet but I have no doubt that this is to come for me as I have high levels of protein in my urine. I am also worried about my ability to conceive and I can sympathise with you re wanting another baby. I suffer from polycystic ovaries and as my circulation is so bad in my legs due to HSP (which I believe causes the pain in my legs) I worry that I will not be able to carry out a pregnancy but only time will tell! Above my post says I am 27, keyboard mistake on my part I am actually 29 and counting down my biological clock!! But again time will tell. Can I ask you the symptoms you suffered before you knew that there were issues with your kidneys – just so I know to look out for them?

  • HSPPrincess HSPPrincess

    I cannot express how grateful I am to hear these stories. My name is Timberly Robinson, I am 17 years old,when I was five years old I was diagnosed with HSP. After two months, my body healed and the doctors informed me that the illness would never come back. six months before my seventeenth birthday I started getting sever stomach pains, I was unable to make a BM, and my legs were so severely bruised that I could hardly walk...all tell tale signs of the HSP. I spent two two week sprints in out local hospital, where they did absolutly nothing. We went to another hospital, seeking a solution or at least more answers and this hospital told me that my symptoms were all psychosomatic. Once again I found myself living in the hospital because I couldn't keep water down. Scared, alone, and upset, my Mother took things into her own hands. She found a specialist 14 hours away. She dropped everything, including my three younger siblings and her husband. While the rest of my family was supportive, this strained everything. We spent three months away from home, during which time I underwent numerous surgeries and tests to learn that not only do I have HSP, being treated incorrectly for it, I also have Crones. I am currently on steroids and aspercole to sooth my stomach pains. I am very contentiousness about my appearance, so this has been very difficult. I am very worried about the side effects of the steroids.

    The Hormone levels are extremely interesting. I have never been on birth control, but I wonder, would anti-depressants have the same effect?

  • Rowi Rowi

    Hi All

    Of course I can explain Marie. More than happy to help.

    My original symptoms were as follows.

    - An awful rash mostly present on my ankles and lower legs but also at its worst on my upper legs, lower belly, upper arms (wierdly symmetrical) down to the elbows and on the front of my hands.

    - terrible diorrreah, made worse after eating food.

    - stomach cramps

    - pain in my shoulders in the early stages and even in my knuckles but this now tends to be ankles, knees, lower back.

    - initially no pain was felt in the kidneys but as things worsened I did feel some pain. Kidney involvement was ascertained by urine samples. Initially blood was presenting as 2+ and protein as 1+ but this gradually got worse. To the extent where I was noticing discolouration.

    My advice to you Marie is not to sit On this at all. If you have blood and protein present it is obviously in the kidneys. I have been advised the key element of this I need to have treated is the kidney. The doctor told me in no uncertain terms that if we did not treat things would worsen. And it would be very difficult to tell how much it would worsen until it was too late. Blood results would be the last thing to show decreased kidney function and by that time damage would be extensive. I would request a biopsy, it is not nice at the time but it will give you a quick answer as to whether you need to be worried.

    On another point mentioned above I had been taking the microgynon contraceptive pill since I was 15 and never had any HSP symptoms. I stopped taking the pill for almost a year to conceive my first child before any symptoms presented. In my case I don't think the pill is to blame. And on Top of this i have not been re prescribed microgynon whilst on my treatment to ensure i dont fall pregnant again. In answer to your question about conceiving whilst the condition is present, I was strongly advised my body would not be able to cope carrying a baby whilst I had HSP. I was advised your body needs to focus on itself, not growing another life.

    In terms of the treatment and how that is going. I've been on the prescribed meds for over a week now.

    The stomach cramps have worsened if anything but I was advised this would be the case. I am suffering from headaches but it's definitely manageable. I have had a few issues with blurred vision and felt a little sick but nothing major.I have been in a strict diet and have actually lost two hand a half pounds rather than gaining which I am more than happy with. The rash has definitely improved the week before I started my treatment I went to a wedding and the rash on my legs was one of the worst I had seen, my ankles hurt to touch it was terrible. I was at a wedding this weekend and thought I would have a similar experience. I had a little on my upper legs but the difference was amazing. I am very hopeful now that things are improving. I know it's early days but I'm trying to be positive and am hoping that the side effects will stay away.

    I will keep you all updated but would say to you all just push your docs as hard as you can. Don't sit and wait for it to worsen.

    Good luck !

    R

  • ZBee ZBee

    Two weeks into taking microgynon again and my rash has gotten significantly better, this may be just a coincidence but the rash that covered around 80% of my body has improved, it's only been harsh once in those two weeks (mine comes and tends to fade for 3 days before coming back in new red spots) and that was under the influence of alcohol, I have found that my symptoms worsen when my body is under physical stress, usually on my feet for longer than 8 hours, or doing something particularly straining.

    I am still optimistic that this could be the answer and I may get better, of course I mentioned this to my GP and she mentioned that HSP occurs for a variety of reasons, viruses and allergies being the main factors, but she said she does not see why not hormone imbalances can also bring this along. I am worried about going away on holiday tomorrow, as Marie mentioned her symptoms got worse when she travelled abroad.

    I am hoping that my rash symptoms stay calm as I want to at least feel comfortable getting my arms out in the sun, if not my legs.

    Hope all is well with everyone, please keep me updated

    Zoe x

  • ZBee ZBee

    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

    • henry54499 henry54499 ZBee

      Hi Zoe,

      I'm in this for more than 10 years now from when I was 18 years old or so. I'm considering the steriods for the first time so I'd like to ask - how are you after this experience?

      Thanks for starting the threat by the way smile

      Cheers

      Henry

    • rocky31676 rocky31676 henry54499

      Steroids will not help in the long run, although it will provide you temporary relief, so you can try low dose for short duration and see if it helps. 

      Are you have abdominal pain and kidney involvement apart from skin burning purpura and arthritis ? 

  • ZBee ZBee

    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

  • margwen margwen

    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

  • bethanygb bethanygb

    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

    • peggy 56995 peggy 56995 bethanygb

      Hello Bethany, I was just diagnosed but I believe that I have had this for years. I saw your post about severe pain when anything brushes against your legs. I have had this symptom for years. When I get a pedicure I cannot have the leg masage. No doctor has ever taken this symptom seriously. I have been diagnosed with fibromyalgia and I have Graves Disease. Currently, I have the rash everywhere except face, hands and back. I also have knee and stomach pain. It was a dermatologist who diagnosed it.

  • jdefs jdefs

    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

  • ZBee ZBee

    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.

  • RM44 RM44

    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... smile

    RM

    • Cinders68 Cinders68 RM44

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  • Sara9 Sara9

    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

  • perstephone perstephone

    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.

  • blueflamingo blueflamingo

    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

  • bethanygb bethanygb

    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

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