Does HSP get any easier at all?!

Posted , 7 users are following.

In October last year, I was diagnosed with HSP, Im a 17 year old girl and I'm on a college course which involves A LOT of physical activity. When I was diagnosed, it was only small spots on my lower legs which over a short amount of time turned purple as they're supposed too, there was nothing wrong with my blood tests, my urine tested for trace amount of blood and protein and apart from very sore ankles, I was fine. I've never really had any trouble with this disease, when I was being monitored at my doctors every week, he was finding very little blood and protein but I got sent for an ultrasound on my kidneys just incase, again everything came up clear, there was no damage whatsoever. However, last week I contracted tonsillitis, I was really ill for someone with just tonsillitis and I was allergic to the penicillin they gave me to clear it up but what really shocked me was my urine, it was red, bright red. I thought that I must just have my monthly but then there was nothing there.. I thought right okay, I'll see what it's like in the morning. I woke up the next day and went to test it (we have dipsticks at home) and that's when I saw my urine was dark brown, straight away I thought, HSP flare up. My mum told me to go straight to the doctors and tell them to test it, I explained everything including the hsp and it was brushed off as a urine infection even though I knew it wasn't. After that I saw various nurses and doctors telling me the same thing even though I knew there wasn't something right. That's when the rash started to develop, it started as normal, a load of red spots on my lower legs and I wasn't phased but the next day i woke up and it had spread, the whole of my lower legs, ankles and feet are covered and I mean there isn't a part that isn't covered, my legs are swollen and sore. We went to the hospital yesterday because I had a lot of blood and protein in my urine but no infection and now the rash but there's nothing that they can do for now. Today the rash has spread all up my legs, my bum, my arms, my hands, my back and my stomach yet the only part that's bothering me is my lower legs. The rash is so bad now that I can't walk and I can't sleep (that's why I'm posting this at 4 o'clock in the morning) I'm in so much pain; I've tried taking antihistamines like piraton and loratadine because the doctors said it takes the edge off but it doesn't. Can someone please help me? I don't know where to turn for advice anymore sad thank you.

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  • Posted

    Hey bud, I really feel for you because exactly the same thing happened to me! I was diagnosed when I was 19 last year just before the summer and the rash was terrible spread everywhere apart from my neck and face. I had holidays planned so the idea of going away was upsetting because I didn't want anyone to see my rash. I had little blood or protein in my urine and no abdominal pain but really painful joints all swollen and I couldn't walk very far without the rash spreading. I would come home from work and check my legs praying it hadn't got worse. Like you I'm also allergic to penicillin and caught a similar infection like tonsillitis but it was called strep throat. I was referred to a dermatologist because hsp is an auto immune disorder but due to the rash it's a type of skin condition. The doctor gave me steroids called predisolone to stop the painful joints which I didn't find worked and didn't get rid of the rash at all. I was more concerned about the rash because it looked really nasty and I was just always down about it all the time. I went back and she asked me to try another tablet called dapsone which is an immune suppressant. Within days my rash had gone I wasn't getting any joint irritation and I thought it was my little miracle worker! I take one tablet a day even now and have blood tests every 2 months to check everything is okay internally because dapsone has rare side effects it can potentially effect your kidneys but I'm on such a small dose that I'm not overly concerned. I don't know whether it's worth you asking your doctors about it because I completely understand what your going through and this tablet literally changed my life. Hope you get better buddy xx
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  • Posted

    Amy, you need to see a dermatologist on an urgent basis and the correct treatment for this condition is steroids, this is mostly to protect your kidneys. I am medical and have also suffered with this for the last year. See your GP and get referred, infact they should prescribe the steriods but it is still worth a dermatology referral.
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  • Posted

    Hi Amy, 

    sorry to hear you're in so much pain. This sounds awfully similar to how I was when I first contracted the disease. Unfortunately for me, it took me 7 months for the rash to clear and that was only due to steroids prescribed to me to protect my kidneys from even further damage. 

    I recommend going to your doctor and suggesting steroids, though the course of treatment itself is not comfortable (you get moody and I was hungry ALL the time) however I don't want you to suffer like I did. When I has the rash, my knees swelled to the point It was painful to walk.  So much so, the back of my knees actually eventually  tore. Though it's healed now, it was incredibly painful and took months to heal. 

    In the meantime, keep your legs elevated whenever you can, I know for an active girl this is frustrating. Take baths to soothe but not too hot because that will be uncomfortable, and cold wet flannels helped me when trying to sleep. 

    Keep hydrated and make sure you get a lot of vitamins from fruit etc 

    I hope this helps you! 

    Best wishes, 

    Zoe 

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  • Posted

    Hi Love, It's a difficult disease to work with, flaring up when it wants to and doctors don't know enough about it to help much. I wouldn't be surprised if you GP/nurses didn't understand what you were talking about thats why they shrugged it off. It took me at least 2 emergancie trips to the doctors and my mum really having a go at one before they "recommended" I visit A&E, it took those doctors 3 seconds to admit me to hoaspital. It took myself 12 years now to finally get a conclusive diagnosis of HSP and when the hospital did finally diagnose me last year I became a learning tool for some of their student doctors.

    I'm a 22 year old girl in my final year of university so I understand your issues that your having with your college course. It's difficult but your college will give you leeway if you can get a letter from the hospital doctors looking after you. This will help with your assignments and exams etc. I was hospitalised with HSP for the 5th time last June/July  for 2 weeks. The pain in my joints, kidneys and stomach was so bad that they had me dosed on Morphine for a week. Once it eased they tried me on several different tablets but I couldn't eat or drink so I couldn't take them. not that they worked anyway. My miracle drug they finally gave me that worked wonders is called Econac (Diclofenac Sodium) I hate to say it but it's one for up the back passage, a suppository. Not the nicest way to go I know but it worked a dream on the pain and the swelling and once they went the rash that was all over my legs, stomach, back and arms faded.It took me nearly 2 months to be able to eat again properly. 

    Once I could one of the firt things myself, my bro and my best friend did was get a pizza. Which gave me food poisoning. where it took my bro less than a day to recover it took me just over a week. the rash flared uo and joint pain started again but I was lucky enough not to start being sick again after the initial poisoning sickness. 

    It is a difficult disease for everyone that has it and I understand your pain with it. It's paticularly difficult for young women, like us, with the pain, the rash and education. All I can say to you really is to keep your head up. It didn't help me when I spent the night crying in hospital, it won't help you sweet. It comes in bits and stages you get times when your ill but more times when your well, you just have to make the most of those times. Until then, try the Econac 100mg Suppositories, it not the nicest way to go but the pain really did disappear and the sweeling did go down Just remember as well, if your need someone to talk to all of us here and the other HSP discussions know what your going through so your not alone in this disease xx

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  • Posted

    Hi amy

    i hi amyi had a similar experience to you (I am 30 now) but when I was 18 I was covered in the rash. It was everywhere except my face and neck, triggered by a throat infection. When I saw the dermatologist he bought in his colleagues to show them the extent of my rash. I had blood and protein in my urine so the focus turned to my kidneys.  At the time I was more concerned about the state of my skin. I do have kidney disease as a result however my kidneys function fine. I had high blood pressure which was controlled with LISINOPRIL and I was also prescribed 10g maxepa fish oil capsules daily. I did not need steroids but my rash was not painful just itchy sometimes.  The rash eventually went and although I have to be monitored because of my kidneys, I only get the occasional flare up of the rash over my hips now. Usually following a sore throat or lots of excersice... I agree about getting a dermatology referral 😊👍

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  • Posted

    O.K.  I'll try again to post but without any links.

    This disease is so frustrating.  Doctors seem to just ignore it.  I had multiple episodes.  Last one getting bad enough it spread above my waist onto my arms, my feet were very sore and knees and elbows got sore, but luckily I don't think my internal organs were having any trouble.   However, as I studied as much as I could about it, there were studies published on the benefits of taking Prednisone, even stating how it is beneficial to reduce the other serious internal problems you seem to now be getting.  Personally, I just went to CVS pharmacy the last two times and had them prescribe it to me. Each time, I felt as if I started getting better as soon as I started taking it.   Talk to you doctor about this and get their opinion on possible benefits and side effects.  

    Some other things you really want to research and consider is vitamins and supplements.  I'm taking a bunch now.

    First, I had a result that said my Vitamin D levels were low and there is a correlation to low levels and auto-immune issues.  I'm taking large doses of that.

    Also, I take a multi-vitamin and other things like Milk Thistle as it as anti-inflammatory and anti-oxidant and protects the liver.

    I started my research by investigating the smartest guy I know to determine what he takes.   Ray Kurweil wants to live forever.  H

    Best of luck to you.  This is one scary and basically misunderstood disease by most doctors.  Unfortunately, with this one needs to do their own research and push the doctors to treat you better (or find a different doctor).  

    My regular Doctor had no idea what this was and still didn't believe it was what I determined it to be.  I finally went to an allergist and immunologist and he knew what it was right away ordering a few different tests to ensure things were o.k. and it was what he thought it was.  He checked for strep also (but I didn't have that). 

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  • Posted

    I would reply to you all on one post but I'm not sure how! I'm so so sorry to hear what you all went through, it's the most difficult thing I've ever had to deal with. I always read that most people tend to get kidney disease so that kinda scares me but I'll just have to take that day as it comes. I have hospital on Tuesday and my mums wrote down every single medication you guys have told me to ask about and about a dermatologist!! I cannot thank you enough for your help, the most comforting thing is actually speaking to people who understand the disease and how stressful it is!! Honestly thank you so much, you've made my life a little bit easier for now! Xx
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