There doesn't seem to be an end...

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I'm 17 years old. I got diagnosed with hsp in November after developing a rash on my leg. I've had it for almost a year and it just won't go. I had a tough tough time of it, from the rash everywhere, joint pain so bad in a wheelchair and then crutches, urinating Nothing but pure blood and being so weak to even move I started to get better and things were looking so bright for me. I had missed a 5 months of school while being off so unwell therefore I failed to sit my exams and my hopes of going on to study in university were shattered, I got accepted to study my higher subjects at college and I was so so excited, it was a second chance, my time to shine. 6 weeks ago, my regular app at the renal clinic showed bloods that were the worst my consultant had ever saw in me and after trying almost every other medication he said a type of chemotherapy was our next step after a renal biopsy. I've been in so much pain, so much. My kidneys ache every single day to the point I just don't wanna do anything, I can't. Some days I'm so weak I sleep for 15 hours and I'm still shattered. My body swells for example eye lids and hands and it's hard to see some days and hard to just carry on normal. I constantly go to my doctors in pain and bloods showing all sorts of things wrong with my kidneys, I just feel like they don't know what to do and have no clue. My whole teenage life has been destroyed for me and I have to watch my friends enjoying their holidays together and parties while I'm stuck at home. It's for the best but very hard to accept. My weight is also an issue, im not underweight but I really could do with putting a few pounds on any advice on that would be so so helpful to me. I feel so guilty at times seeing so many people worse off than me but I just don't think anyone knows how draining and painful this disease really is if it hits you hard. I just want some positivity. I want there to be a light at the end of this tunnel, please any advice would help. Thank you so much in advance x

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  • Posted

    Hi

    Goodness me you've really got a severe case of it, sounds absolutely awful for you.

    My son got it at age 15 in Nov 2015 he was told he had it severely, rash on arms and legs up to lower back, swollen and painful joints, abdominal pain and blood & protein in his urine.

    He was hospitalised 4 times and has had 2 kidney biopsies. In Feb this year was put on a 4 month course of steroids called Prednisolone, one month into this started something called Azathioprine given by Rheumatologist and also takes Enalapril to suppress the protein in his urine.

    He now doesn't have the rash (it may come back sometimes maybe if he's tired or being lots but gradually fades again), has had no joint pain since starting Azathioprine. He has regular blood tests and is still closely watched by renal doctor at Leeds General.

    Have you had any steroids? I think this is a must and you should be put on a similar length my son had starting on a high dose for the first month.

    I really do hope you start to get better and be out with your friends. I had never heard of HSP and now wish I never had. It's been an awful time for him and I couldn't believe there was nothing to give him to help with treatment.

    Sending you best wishes and hope things start to improve.

    Helen

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  • Posted

    Beth,   I can't imagine how hard this must be for you.  I was lucky to have only had it a few times and the Prednisone worked reasonably well to slow it down each time after I finally figured out what this was.   However in my case I never stopped researching and found it was likely an allergic response (in my case Chocolate) and have been free of this for a couple years now.   Since you keep getting this I wonder what are all the different drugs you have taken and how has the responses been to each of them?  Also, have you tried to cut out almost anything even remotely considered an allergen or something people are sensitive to?   I cut it all out and then very slowly after symptoms cleared then began to slowly add things. I truly think only a small percent or of this type and unfortunately your severe type I don't this are, but it would not hurt to try.  Anyway, I hope you keep tryiing things and your body has a chance to get better so you can eventually put all this behind you.   Teen years are stressful enough, and to add this on top of this is just an incredible challenge.  I'm glad you are writing about it and sharing because it helps just to know there are others going through this.   It is rare enough that most people don't even believe it is a real disease most of the time except in cases as bad as yours.   Stay positive.  Keep researching.  Let's hope they are able to better diagnose and treat this in the near future.

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    • Posted

      Hi Harley! I hope you don't mind me reaching out - but I found your response very helpful and informative! My 2-year old daughter was diagnosed with HSP back in December. We had no idea what it was or what caused it - her pediatrician simply told us that it may happen after a bout with an upper respiratory infection - the only problem is that she had not been sick at all! My wife and I were completely puzzled. Thankfully, her condition began to improve after just 2 weeks, and today, 8 weeks later, she has no symptoms at all, which we are extremely thankful for. What I wanted to mention is that once her skin began to clear after week 2, there was a two or three day period when we began to give her hot chocolate and chocolate chip cookies; we noticed that the marks were coming back! My wife and I then realized that our daughter's HSP began a few days after we introduced her to chocolate milk! We have since then eliminated all chocolate from our home! She did sneak in a bite of chocolate the other day because her older brother left it on the table, and she did get a about 4 or 5 tiny little marks on her legs, but nothing serious. You mentioned that you did research, and we did some too that led us to find some kind of relationship between chocolate and HSP, but we weren't entirely sure - now I've read about 3 people sharing their experience with chocolate and HSP, and it feels good to know that we aren't crazy! We had no idea that chocolate could lead to this kind of reaction. I was wondering if there are there other things you have discovered about chocolate or foods related to chocolate and HSP? We want to make sure we keep all foods in the chocolate family away from her!! Thank you for sharing this! 

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  • Posted

    I'm glad you wrote this information.  I almost missed it since I'm not scanning all the updates.

    The good news is that I finally avoided chocolate for at least 2 years then accidentally had  a dusting of chocolate on some cappuccino and realized I did not have any spots, then I slowly reintroduced more and more chocolate to monitor for any issues and now I'm totally free of the reaction.  I also have not had a single case of it since my accidental last tiny bit of a small chocolate ball that gave me spots about 2 years ago.   

    There was definitely a correlation to chocolate exposure BUT I speculate is has something to do with how a person's body responds to triggers of the immune system.

    Put another way, if a person gets sick, too much sun, gets too exhausted or is exposed to some type of allergen (food or otherwise) enough during this time the body is hyper sensitive, then the body goes into this over reactive immune system response.  However, after getting it under control and the body recovers after enough time, then it gets back to a normal mode.   Evidence seems to show that for younger people, the possibility for the body to recover out of this over reactive mode happens more quickly with less chance of reoccurrence.

    Therefore, I am hoping that in your case, if you can just avoid enough possible items that would cause the body to go into immune system response, then quickly they won't even have issues with chocolate in the future.    So just keep careful watch avoiding these things as best as you can and after some amount of time, slowly reintroduce the food items and watch them for any symptoms.   Good luck !  Thanks for sharing your story which may add to the evidence and help us all. 

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    • Posted

      Harley, thank you for your response! I am so glad that you no longer have any reactions! As much as we appreciate doctors and medicine, you know your own body and what causes it to act in certain ways; and this is exactly what we did with our daughter when things that we were learning about HSP didn't apply to our situation (e.g., having an upper respiratory infection prior to the onset of HSP).

      You made some great points regarding the immune system - our daughter's pediatrician put it similarly with respect to the immune system being in some kind of overdrive mode. Around the time our daughter got HSP, everyone in our household (2 other children, my wife and me) had strep throat - except for our youngest daughter (the one who got HSP). We are not medical professionals nor scientists, but we were wondering if somehow her body didn't get strep, but something "strep like" got into her body, her immune system went crazy trying to fight it off, we give her chocolate milk, and then HSP comes along as a response to this chocolate milk since her immune system was already in "attack mode" so to speak. Now, since her immune system is still hyper sensitive, chocolate is a trigger until - as you noted - her immune system settles back down.

      Interestingly enough, we gave her some milk yesterday and the day before of the same brand that produced the chocolate milk, and before bed last night she had spots - so we're not going to give her dairy products for some time to see how she responds - and certainly not that brand again. 

      Thank you again for sharing your wisdom. My prayer is that everyone who gets affected by HSP finds a way to get their control of their bodies again - and I hope that the information we have shared on here can be of help to others. There is hope! 

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