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Help for re-occurrence?

Posted , 4 users are following.

teresakoch
teresakoch

My daughter was diagnosed 6+ months ago.  The first 2 months were terrible, rash was a solid red mass, joints so swollen she couldn't walk.  After months of steriods and then immuniosuppressants she leveled off.  She has never been rash free.  She has other symptoms that come and go.  Stomach pain and vomitting, swollen joints  and big rash flares.  But, it usually lasts a few days and then the symptoms subside.  Her rash is always there, it's just better some days.  What we've noticed is that she always has a flare up after some event where she has stood or walked for long periods of time, like an entire day.  This past weekend she went to a day long music festival, where she stood nearly the entire day 11:00am to 9:00pm.  By the time she got home, her rash was horrible and her knees were swollen.  Two days later she has stomach pain and vomitting.  Her nephrologist said it was coincidence the last time we talked about this.  But now I'm not so sure.  Does anyone else have this kind of reaction?  

0 likes, 6 replies

6 Replies

  • linda29209
    linda29209 teresakoch

    Posted

    My daughter was diagnosed in Dec 2014 (19 years old) and she had exactly the same issue with the rash never completely going and any movement would cause a flare. The rash is still there but is not as severe and movement does not always cause the same level of flaring, although tight clothes can cause the rash to come up. She is still on steriods (tapered down to 5mg) and also Colchicine. Also changed her diet to remove diary, gluten and wheat. Hard to know what works and it just seems to go on forever, but looking back she is definitely in a better place. Hope your daughter improves soon and feels better.
  • mei41806
    mei41806 teresakoch

    Posted

    I think your are right! My son is 14 years old, we also noticed that after a long walk or extreme physical activity, such as school event, the rashes became worse, sitting too long is also contributing to the rash. We did not do much about it. What else can we do? Our kids needs to enjoy their life. Not to attending school activity is out of question.
    • teresakoch
      teresakoch mei41806

      Posted

      My daughter is now doing a tutoring program through her school.  She has the same classes and her tutor comes over and gives her the work, discusses it and then collects it.  She administers the testing too.  It was just too difficult to keep up when she was missing days of school at a time. It's such a shame, it's her senior year.  I hope your son improves
    • mei41806
      mei41806 teresakoch

      Posted

      I just hope the doctor will be more helpful than simply saying it is no cure. As parents, we can try to find out what caused the rash, keep a diary, document the food, activity, anything you thought might be helpful for the future diagnosis. All the best! Keep our fingers crossed for our kids!
  • LyndaLou7
    LyndaLou7 teresakoch

    Posted

    My daughter had HSP for the first time in November, 2014 & the second occurrence February, 2015. If she is standing for a while, such as for a concert or involved in sports, her legs still start to itch & hurt slightly. I usually have her lie down for a while with her legs elevated & she feels better.
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