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any other adult females with HSP??? pls reply

Posted , 29 users are following.

KEO-Bayne
KEO-Bayne

Hi, im a 35 yr old woman who was diagnosed with HSP in 1997, after being admitted to hospital with abdominal pains. I was put on steriods & dapsone following diagnosis, which eventually eased the visual symptoms. It was all made worse after my son was born, which has left me in stage 3 kidney disease. I now suffer severe arthralgia in my knees hands & ankles, proteinuria, hematuria & problems with my bowels & kidney pain. No matter who i speak to, no one knows what will happen with my condition, & ive never been able to speak to anyone else with this condition in adult hood. Would anyone like to get in touch & share their experiences?? I hope so! would love to hear from someone else in the same boat!

4 likes, 37 replies

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  • ciara94952
    ciara94952 KEO-Bayne

    Posted

    Hi there, im a 20 year old female and have had hsp for 6 months now. I was just wondering if anyone noticed their symptoms being affected by their menstrual cycle at all. I notice that the first and the last week of every month, my symptoms are a lot worse whereas the two weeks in between my symptoms are a lot better. Just as I start to think it's clearing, it comes back on the exact same day each time. Not sure if this will keep going on this cycle forever or if it will stop once the hsp is no longer active...
  • sarahxemily
    sarahxemily KEO-Bayne

    Posted

    Hi everyone, I hope you are all well and in remission. 

    I know this is an old thread and I'm just hoping some body reads this.

    I'm 41 (female) and I was diagnosed about six months ago with HSP. I'm at the end of my tether really. I have bad leg ulcers because of this awful disease and I lived with it for four months before my GP actually bothered refering me. I ended up in A&E because nobody knew what to do. The ulcers were so badly infected that it was making me really ill. This has happened so often now, the ulcers respond to treatment but then get infected. Nobody knows the correct creams or  dressings to use, I feel a bit like a guinea pig as every doctor I have seen doesn't have much experience in this illness or any experience at all.

    I'm on Methotrexate for the auto-immune part which is awful as it makes me so sick and I'm currently on Flucloxicillin for the infection. I was on Prednisolone for three months which has caused me to pile three stone on.

    I have had kidney trouble but it seems to be getting better and I'm having blood tests regularly to keep tabs on it.

    If anybody has had experience of this I would be so very grateful for your advice because I'm pretty sure the medical professionals around me (Dermatologist, Rheumatologist, Vascular Consultant & GP) have no idea what to do about it all, especially the ulcers. You guys are so much more experienced in my opinion!

    Thanks for reading xx

    • sallyrr
      sallyrr sarahxemily

      Posted

      I am 65 years right now, but got hsp 13 years ago. I had trouble with ulcers as I had to be on my feet a lot, do to being a dog groomer. I got one very deep ulcer and my internist didn't even realize it was an ulcer. Finally, was sent to a plastic surgeon, that knew how to deal with it. He had to have me keep putting a debriment mixture in the ulcer to get all the dead tissue out, so than it could heal up. The ulcer ate thru the main vein going down my leg, so even after it was healed I still had blood pooling really bad below where the ulcer was, which is still a large deep scar. I had to have the vein stripped out to stop the pooling. I still every fews months will have a few spots show up, and my legs will swell, right now am having troble with rashes on my lower legs and feets. Last summer had lymphodema pretty badly. Best thing is to try to eat healthy and stay active. Never had joint pain till hsp. Now it is part of life, but have to stay active, or it gets worse. I took a lot of different drugs, and was allergic to most. The last I was on was cellcept and prednasone. I haven't taken anything for over 10 years now. 

  • rocky31676
    rocky31676 KEO-Bayne

    Posted

    Can you update your condition now and what you found about HSP ? 
  • joconnor
    joconnor KEO-Bayne

    Posted

    I am a 62 year old woman. I got the purpura rash on my legs about 2 weeks ago. That was the only symptom at first, but then I started having swollen ankles and knees, abdominal pain and diarrhea, I have been unable to walk for the past 4 days. The doctor at the ER diagnosed HSP. According to the information he gave me, and what I have read on the Internet, this is supposed to clear up by itself in 4 to 6 weeks. I am alarmed to hear that so many people continue to have symptoms for years. I hope it gets better, because at this point I am barely able to function.
    • elaine55
      elaine55 joconnor

      Posted

      Hi Jo I had it 15 years ago and took the hospital 12 days to diagnose me. It is a serious illness and needs to be treated with steroids and this needs to be administered ASAP. If your diarrhoea is black it means you are bleeding internally. It can also cause kidney damage if not treated quickly. I would go back and insist on treatment. The diagnosis that it will go away is for boys around 8-12 years which this illness is quite common.

      i kept putting it off too and was off my work for 5 months.

      i hope you do get better quickly.

      Elaine

  • eduardo85052
    eduardo85052 KEO-Bayne

    Posted

    Hi, I am a male brazilian 28 years old. I had my first HSP episode in 2015, January. The first episode lasted for 4 months and prednisone was enough to solve but I have been hospitalized for 1 month with classical rashes and severe gastrointestinal pain until they make the diagnosis. Now I am in the second episode. It has started 11 months ago without rashes but with severe gastrointestinal pain again. The diagnosis this time was made with capsule endoscopy showing erosions in the small intestine. This time the prednisone did not work and azathioprine after 6 months neither too. My little luck is that my kidneys are intact. Anybody here has an unstoppable case of HSP like this second one that I am having? The gastrointestinal pain is so strong and we have to deal with it everyday, I can not focus on studying, doing exercises, playing football ... The quality of life is being terrible =/
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