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16yr old, HSP 9 weeks......

Posted , 7 users are following.

teresakoch
teresakoch

My 16 year old daughter has had this for 9 weeks.  Skin biopsy diagnosed about 6 weeks ago.  Swollen joints, abdominal pain, Kidney involvemnt, abnormal urinalysis, abnormal bloodwork.  We have appointments scheduled with Nephrologist and Rheumatologist but we can't get in for several weeks.  We thought this would be over by now.   Just wondering how long to expect this lasting.  She is basically homebound.  

1 like, 12 replies

12 Replies

  • ciara94952
    ciara94952 teresakoch

    Posted

    Hi there, I'm a 20 year old female and have currently had hsp for 26 weeks. I have renal involvement as well as bowel involvement at the beginning. It started in November with a rash that came and went and swollen joints here and there but it wasn't until the end of November where I was hospitalised for around 3 weeks in total (3 separate admissions) that I was diagnosed with hsp. I had severe stomach involvement, including pr bleed as well as vomiting blood etc. I was out on steroids and have been on them since the start of December. Following December the rash has only really gotten worse for me, I have it all over my legs, arms and my trunk. Thankfully I have no pain in my stomach anymore and although not ideal, I am no longer home bound.

    My kidney involvement became apparent in January where I was hospitalised again to go on a steroid drip to try control the hsp although this didn't work for me. At the beginning of March I was put on mycophenolate mofetil (cellcept) and I believe this has begun to help my rash but i still get new rash daily if I do too much. In March I also had a kindey biopsy which just confirmed active hsp in the kidneys. Proteinuria and hematuria has gone down from 3+ each to 2+ each which is good.

    I was hospital bound most of December, bed bound most of January and February. More active in March and have been working most of April, a day on and then a day off (I'm a student nurse, on temporary leave, so have to pay back all my student finance etc). The rash would be constant back in December and January regardless of movement whereas now it seems if I sit in an office chair all day that will cause some rash to appear.

    At the moment, I have good weeks and bad weeks. No more stomach pain which is brilliant and never really had any issues with joint pain, just the occasional sore knee or ankle for a few days. Currently trying to taper off steroids as in my eyes, they have never helped the rash and the side effects are more hassle than their worth.

    It's such a frustrating disease and it's gotten me really down at so many points but what I keep being reminded is that it is in almost all cases self limited and it will get better! It's just a lot longer and slower a course than websites like NHS choices let on.

    I really hope your daughters okay. I can complete relate to how she's feeling.

    If you have anymore questions, Please don't hesitate to ask me!

    • teresakoch
      teresakoch ciara94952

      Posted

      Thank you!! I was just feeling so frustrated, like no one has had this and just pretty clueless.  Thank you for sharing.  I'm just so sorry you have had to deal with it this long.  I am hoping we can find a course that will get her at least feeling a bit better.  It sounds like we could have a ways to go though.
  • blueflamingo
    blueflamingo teresakoch

    Posted

    Hi, I'm a 29 year old female and my HSP has lasted for five years so far. Without medication I found it very difficult to walk but so far I haven't been bad enough to actually give up working. Steroids did nothing for me but dapsone changed my life (no more joint pain). I still have the rash daily on my arms and legs. So far my kidneys are not badly damaged but they are affected. There may not be a quick fix - I found this very hard to come to terms with after my GP initially gave me the impression it was treatable.
    • teresakoch
      teresakoch blueflamingo

      Posted

      5 years.  Wow.  I am really sorry.  Initially, her doctor made it sound like it would spontaneously disappear....... Steriods seem to help with the swelling and joint pain.  But she just tapered off after about 7 weeks on them.  So we will see.  I am seeing now, probably not a quick fix.  Thank you so much for sharing.
    • blueflamingo
      blueflamingo teresakoch

      Posted

      HSP is pretty rare and most doctors have only seen it in children, who usually do see spontaneous recovery after a few weeks/months. As a teenager/adult it tends to go on. Saying that, I did experience 'remission' for the best part of a year after the initial 18 months so I know it can happen.
    • teresakoch
      teresakoch blueflamingo

      Posted

      Yes, it does seem rare.  Neither of the doctors she is currently under the care of have seen it in someone her age.  Her primary care still thinks there is something else going on. But I am less sure of that.  She literally has all of the symptoms of HSP and really nothing else.  So we will see. I just hate seeing her like this.  Before this happened, she played club volleyball (she is 6 feet tall) and was an excellent student.  Now she is in bed most days.  Luckily, her school has been great.  She has a tutor come out each week and help her stay on track.  She is a junior so she needed to stay on top of this for college.  It always could be worse.  So we are grateful.  One thing is the rash seems to come and go with no apparent reason.  Last week her arms and thighs looked way better this week, really red and raised again.  Her rash is worst on her legs and feet but is all over her arms, hips, butt a bit on her back and sometimes on her face like her around her eyes, lips and nose.  
    • wendy92629
      wendy92629 teresakoch

      Posted

      So sorry to here this. Its a mystery this illness. Nobody really understands in. Despite lots and lots of research from all over the world. National studies are taking place. Where abouts are you? Is she under a hospital?

       

    • teresakoch
      teresakoch wendy92629

      Posted

      She has not been hospitalized.  Just under the care of multiple doctors, none of which necessarily agree with the other! We are in the US.  In Las Vegas, Nevada.
  • deep48021
    deep48021 teresakoch

    Posted

    Hi there, our little girl had this for 5 months last year and it wasn't pleasant. Feel for you all, apparently 5 months is a decent average length.
    • wendy92629
      wendy92629 deep48021

      Posted

      Hi How is your daughter now? Does she have any joint pain or other symptoms like extreme tiredness or very tearful etc. Always like to discuss and encourage people to monitor children who have suffered. Also, are you based in UK? feel free to message me.
  • serenesusie
    serenesusie teresakoch

    Posted

    My son is 15 and was diagnosed with HSP a few months ago,  He had a rash all over both legs and some kidney involvement and low iron levels. He was terribly tired and had some time away from school, in Lincolnshire. The school have been supportive and when he did go back he didnt do any PE at all, which helped.  He wasnt put under a lot of stress, which also helped a lot.  The rash has almost gone now and he's much more active.  I hope your daughter gets any treatment she needs soon. We had quite a job getting the right diagnosis but once we did get it, he was well monitored and hasnt had to have steroids.
  • LyndaLou7
    LyndaLou7 teresakoch

    Posted

    My daughters was diagnosed in the end of November, 2014. She had joint pain, stomach pain, swelling of her legs, high proteins & blood in urine tests, loss of appetite, and was extremely tired for the first several weeks. She had active HSP for about 6 weeks the first time. In February she had another head cold & HSP came back. It was not nearly as bad as the first time but hung on longer, about 12 weeks. I'm hoping it does not continually resurface but we'll have to wait & see. I figure at least I know the signs of it. Hope your daughter feels better soon!
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