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HSP / Henoch-Schonlein Purpura (Vasculitis)

Posted , 3 users are following.

margie00532
margie00532

I was just diagnosed a few weeks ago. It seemed to be improving but then a week ago flared with a vengeance. Again it started to improve and then on Wed of this week re-flared significantly. I have it on both legs, top to bottom, front and back and just noticed a few minutes ago that it's started on the back of my arms. I'm an adult woman, I've never ever had any thing like this in my life and I am at mid-life. I can't take prednisone as I had a bad reaction to it. My family Doctor diagnosed it and when I had the bad flare up last week, I ended up in the Hospital for 4 days. With swollen ankles, calves, & knees along with extremely painful joints.  I've seen a few Dr.'s now and see a Rheumatologist next week. Have other's learned of the Vasculitis Foundation and the Support Group on Facebook? I am new at this but it's a place to start. If anyone else is in the same boat, I'm interested in what flares you up, and how you cope? 

0 likes, 3 replies

3 Replies

  • grneyedgrl74
    grneyedgrl74 margie00532

    Posted

    Hi Margie, I'm very sorry to hear you have this going on. My daughter Zoey had it pretty bad a beginning the same way August of 2015. Symptoms of painful joints and swelling lasted 6 months. She is beginning to show signs again that she may be having a flare up. Painful joints, fever in the knees tonight. Headache on only one side. She is just shy of turning 12. I remember reading and being told that she may have a flare up once later in life but it's not supposed to be a severe. Did you have this as a child? Is this your first flare up??...sending prayers for quick healing!!

    • margie00532
      margie00532 grneyedgrl74

      Posted

      It breaks my heart to hear of your young daughter being faced with this. I've read that it is more common in children but more severe in adults, I truly hope she isn't suffering as badly but she does have similar symptoms. I keep waking with a mild headache but also areas of tenderness on my scalp, in addition to the other symptoms. As far as I know, I NEVER had this as a child. I believe I had chicken pox and possibly measles but not this, that I am aware of. My symptoms: rash both legs, one arm. Swelling and pain in my ankles and excess lymph/puffiness and pain in my legs and arms. Some random abdominal pains and diah. I noticed last night some hard lumps under the skin of my right forearm, no rash but invisible lumps under the skin. All symptoms improve slightly overnight with bed rest and then wirhin 10 mins of standing in the morning, pain sets in and quickly the swelling accumulates again. I am being treated with only pain meds at the moment and an Rx for itch, I haven't needed to take it yet, but prior to getting it, I've had a few insane nights of scratching. That seems to occur just before a new crop of rash breaking out. I see a Specialist/Rheumatologist next week. I certsinly hope she has some answers for me. I have been urged to get a skin biopsy but another sufferer informed me of the importance of it being a sample tsken from a new/fresh red dot/rash spot to be accurate. Hope you find some relief for your little girl. 

    • grneyedgrl74
      grneyedgrl74 margie00532

      Posted

      In very sorry you are having to deal with this. Zoey went through all of your symptoms and at some points unable to walk having to use crutches and a wheel chair. She used an itch cream called Caladryl every night and naproxen for swelling. Steroids did a bad number on her and she was in it for only a week. She was monitored weekly forkidney function. I know now that the cold weather is causing her flare up. She is beginning to get a lot of the same symptoms all over again with swelling and fever in both knees and headache radiating on only one side. Standing causes her to immediately go into itch mode. sad This thing is terribly debilitating! I truly hope you get relief soon!!
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