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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

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