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Henoch Schonlein Purpura in Adults?

Posted , 75 users are following.

ZBee
ZBee

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

5 likes, 114 replies

114 Replies

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  • CoolCheese
    CoolCheese ZBee

    Posted

    You will be happy to hear my teacher has turned this into a homework question in my Body Works class.
  • karina22263
    karina22263 ZBee

    Posted

    Hi ZBee,

    Thanks for sharing your experience.

    I'm 26 years old and recently diagnosed with HSP, however the diagnosis is not firm as we're still waiting for my biopsy result.

    My lab test result was negative using ANA ELISE, however it showed a positive result using ANA IF method. Anti DSDNA was negative and kidney is not affected.

    Rashes on my ankles keep on reappear and it's getting harder and harder to walk especially on the afternoon or when the temperature was low.

    Do you mind to share with me what kind of lab test you did and what kind of result to expect so that we can conclude more that what I experienced was HSP?

    Thanksss

  • linda82350
    linda82350 ZBee

    Posted

    I'm a 63 year old woman who was just diagnosed with HSP.  I've had the symptoms for 4 months.  I've expire ended the arthritis, swelling in all my joints, tummy pain ( my doctor thought I had a bleeding ulcer) kidney issues, and the crazy burning itchy rash on my feet, ankles, lower legs and belly. The exhaustion is so disabling.  I am so happy I found this forum, I thought I was losing my mind!
  • lane79406
    lane79406 ZBee

    Posted

    Hello ZBee - I'm 32 and have dealt with this disease for over 15 years. Please please all of you battling this, try taking a regular dose of fish oil. It's been the single most important factor in helping me manage this disease. Take 4-5 grams per day depending on the fish oil brand. I try to get 1.5 grams of EPA, 1 gram of DHA. I have no rash, no joint pain and no abdominal pain. Before I started a regular fish oil regimine I experience all of these issues. Hope this helps.
    • blueflamingo
      blueflamingo lane79406

      Posted

      Your messages about fish oil seem to me like an advert because they are all identical or very similar and all posted around the same time.

      Are you able to provide any more information? Such as, how long have you taken it? how quickly did it help? do you take other medication? do you have kidney damage? was it suggested by a doctor?

      And I'd be interested to know, do you still consider yourself to have active HSP considering you mention you don't have the usual symptoms?

  • natalie77410
    natalie77410 ZBee

    Posted

    Hi Everyone,

    I feel really sorry for all of you because it really is an awful thing to have and most people don't understand just how sick it can make you and just how little the doctors know about it.

    I was diagnosed with HSP three months ago but have had symptoms much longer than that.

    In 2012 I noticed a few tiny spots on my ankles occasionally and then I had one day of the HSP rash all over my legs, arms and torso - my skin was completely red. I went to the hospital and the dr gave me steriods and didn't know what it was.

    In October last year (2015) I started getting some spots on my legs after a respiratory infection (thought they were awful at the time but little did I know just how bad they could get). They came up pretty constantly since and then around NYE I had my typhoid/Hep A immunisation because I am travelling soon and within a few days I had the rash all over my legs but this time it was painful and raised. The week following I had crippling stomach pain and joint paint - couldn't walk and was in constant agony. The doctor gave me 50mg prednisone for five days which helped with the pain but not the rash. He said it would go away soon... Two months later the rash was still coming up almost daily and was given 10mg prednisolone daily that was tapered down over six weeks. The day that I stopped I developed stomach pain again and vomited that night. At the time I had a bit of a cold/sore throat so not sure if that's related?

    I have had tonsil infections a lot in the past year and looking to get them removed to see if it helps. I'm seeing a gastroenterologist on Thursday to look at my abdominal symptoms and maybe organise a colonoscopy. I also get cold sores if that applies?

    I have been on the pill since 2012 and stopped recently to see if it would make a difference - so far nothing but it has only been three weeks.

    I'm travelling to Europe in two months for five months and I am really worried my trip is going to be ruined by this damn illness. I need to get it sorted before I go but I don't have private health cover so everything takes a long time. Does anyone else find that it worsens when on a plane? I'm really worried about my 24 hour flight because of some people finding it worsens when sitting...

    I hope all of you recover soon.

    Natalie

    • blueflamingo
      blueflamingo natalie77410

      Posted

      Hi,

      I did a 12 hour flight in November. I was on medication (dapsone) so my symptoms were definitely not at their worst prior to the flight. The only increase in symptoms I noticed was an increase in the rash in a particular patch on my leg from where I'd had my legs crossed. I assume this was more from the pressure rather than anything to do with the flight. I find my rash symptoms are so much better if I exercise/keep moving so I stood up as much as possible. I went to Mauritius and the increase in temperature had a fantastically positive effect on my rash. Apart from the small patch on my leg from the pressure I didn't get any new marks for two weeks. Amazing! As soon as I returned to the cold of London, the rash returned (literally whilst still in the airport). There's a lot of recommendations to rest and keep your legs up but I find the opposite. So if joint pain allows it, try increasing activity (e.g. at least five miles of walking every day) and see if it helps.

    • natalie77410
      natalie77410 blueflamingo

      Posted

      Thanks! Weird, my symptoms came up in the middle of the Australian summer and I found heat made them worse, I would put ice packs on my legs
  • natalie77410
    natalie77410 ZBee

    Posted

    Does anyone else find they get tiny red spots in their hands and feet? Mainly in the fingertips and the inside of the sole of the foot. They can be quite painful/stingy but look different to normal HSP rash
  • natalie77410
    natalie77410 ZBee

    Posted

    Does anyone find they get stiff/sore muscles where the rash is? 
    • linda82350
      linda82350 natalie77410

      Posted

      Yes, I have as my rash or as my doctor called it petechiae was the worst on my feet and on my ankle bones, it did go up my legs and on my torso but now as severe as on my legs,  I experienced joint pain, and muscle pain all over my body! 
    • mallory35643
      mallory35643 natalie77410

      Posted

      I'm sore everywhere, when I wake up my fingers take a few minutes to loosen up and stop aching. Then by the end of the day I need a warm compress to help my knees stop aching. Luckily I've found it's been managed with warm and cold compresses. I don't think everyone is that lucky.
  • mallory35643
    mallory35643 ZBee

    Posted

    Hi I'm a 24 year old female (caucasion decent... I heard its mostly in asian decent). I have to say this forum makes me want to go hide in a hole. I was dignosed with HSP in September of '15 same symptoms rash on lower limbs that climbed its way up my torso stopping at my kneeck, joint swelling to the point of not being able to walk, my feet when I wore shoes ( I wish I had,had crocks) made my feet feel like someone poured acid on them. no pain meds could damper that feeling. eventually I began to vomit thought it was just a bad stomach ache... fast forward eight hrs or so and it started turning into blood and i starting having bloody diarhea. I ended up being taken by ambulance to the hospital and then being transfered to a larger hospital (i'm rural) that was able to deal with a bowel interception, luckily no surgery was needed. The rheumatologist began treating me with high dose prednisoe (1000mg a day x 3days) via IV and then began to taper off starting at 45 mg oral, I relapsed 3 times before he combined the prednisone with cellcept. That has worked so far its now April 2016. My dr. believes i'll be on cellcept for a year or so. The rash took time to go away (does come back if I eat a lot of salt... which is my weakness, or if im on my feet to long). My Dr. has treated three adults and has said that none have had a reoccurence so far, one is at least 2 years out of first episode. That made me so hopeful, but reading this is hard. I'm planning on going back to school this fall and really hope this does not flare up and postpone my plans... I really battled with the steroid acne, i'm acne prone anyway and it became painful and really hard to go outside anywhere due to beig worried about what people would think. I eventually said sc**w it and stopped caking on the makeup. now that i'm off steroids its almost completely gone. however I used to have long super curly hair, my hair has gone almost completely straight and is falling out everyday. I cut it short to see if that would help and it felt like it made it worse. I was wondering if anyone else has struggled with hair loss and if there is hope it will go back to its original state. I use only natural products in it, but that does not help.

    I wish all of you the best of luck! I cannot even believe there is a forum for this it's amazingly helpful!! if not incredibly scary. Hopefully we can together find a way to control this so future HSP patients can have more direction and more information.

    • linda82350
      linda82350 mallory35643

      Posted

      It's it's interesting I never heard about it being in mostly Asians, I'm Caucasian, but I did have a DNA profile done

      and it states I was 12% Irish, 2% Asain, 56% Western Europe, the rest of the 31.8% from various Eastern Europe . I do not look Asian at all so that was a surprise!  I understand that there are more cases in England and that area than in the USA, (I live in Northern Wisconsin USA) I've heard the cold can affect it. Right now my symptoms appear to be in remission, although I noticed a few red spots starting on my legs, I've never had the rash on my face! The photo below is a secondary out break on top of the first outbreak! 

    • blueflamingo
      blueflamingo mallory35643

      Posted

      Hi,

      I'm on mycophenolate mofetil (which I believe is cellcept). I'm also experiencing hair loss. My doctor says it isn't a common side effect but some people are just sensitive to immunosuppressants. I had more severe hair loss with azathioprine but it stopped falling out once it was out my system (took about six weeks) and my hair regrew. So I'm confident it will stop when I stop taking MMF (also due to be on it for about a year but it hasn't done anything for me after four months). I also had horrific acne with steroids among other side effects and it will have to be a matter of life or death before I consider them again.

    • mallory35643
      mallory35643 linda82350

      Posted

      Who knows if it truly is more prominent in Asian decent. I myself am native American and Scottish, I live in Washington State. It seems that there is so much contradicting information it's hard to really know what is correct and what isn't. I think the only constant it is that it's different for everyone.
    • mallory35643
      mallory35643 blueflamingo

      Posted

      I'm really happy to hear it may come back, however the vain part of me is very sad it may take awhile. I wish it would reappear tomorrow. Oh well, it really is comforting to chat with people who are dealing with similar issues.
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