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I have HSP! What foods/drinks triggers it?

Posted , 5 users are following.

Cazza12345
Cazza12345

I’m 18 years old and just recently got diagnosed with HSP. It’s summer and it takes 4-6 weeks for me to recover, I’m hoping I recover sooner because I go out a lot, I work, meet up with friends and I play sports. As you can tell I can’t do that which is frustrating!

 I have a rash over my legs, feet, elbows and thighs and have swollen feet (they’ve gone down a lot though). I was just wondering if anyone could help me by giving advice on what not to eat or drink and what alcohol not to drink and what alcohol I can drink. How long does it take for it to go away? Will I have it for life?

Thanks,

Cazza12345

0 likes, 11 replies

11 Replies

  • chloe38149
    chloe38149 Cazza12345

    Posted

    Hello,

    I know how you're feeling - but it does get better! I had awful cases of HSP a couple of years ago. I'm 25 now, and although I get small flare ups it has really calmed down. I do find that alcohol really makes it worse, I stopped drinking for a while, But like you it's a major part of my socialising! I do find that cider and sugary drinks seems to make it worse?! I wake up with flare ups after drinking these. Although gin and tonic or vodka soda don't make it as bad (this could be in my head, But just personal experience). Although I haven't changed my lifestyle much, I rarely get the rash now. Before it was all over my body, and I understand that in the summer it's horrible because you don't want to wear dresses etc. Mine was treated with heavy doses of steroids, and although these we're horrible!!! It really did calm it down, and it hasn't come back badly since! Although I couldn't find a definite cause for flare ups, it was at its worse when my stress levels were high. So just make sure you're looking after yourself, make sure you have a healthy, calm, state of mind and be assured it will get better!! Xxxx

    • Cazza12345
      Cazza12345 chloe38149

      Posted

      Hi Chloe,

      Thank you so much for your reply! I just wanted to find out more about it as people on other discussions were saying that alcohol flares it up and I love having a couple (or 10) at the weekends. I drink gin and vodka so I think by your experience since it doesn’t flare up as bad I might stick to them, although I might experiment aswell to see what I can drink and what I can’t. You reassured me an awful lot and it will get better! This has helped a lot! How long would your flare ups last when they were bad? And again thank you so much for replying! Xxxx

  • AnotherAccount
    AnotherAccount Cazza12345

    Posted

    Hey, sorry to hear you've been diagnosed with HSP; I got diagnosed in January of this year and still am constantly at odds with it. Don't pay attention to the 4-6 weeks thing, I'm not trying to scare you but from my experience (almost at 6 months of this now) and the testimonials of people on these forums, suggest that this disappearing in that amount of time would be nothing short of a miracle. I'm 20 and was at uni (this made me have to quit my degree, but I've transferred to another course now anyways) and love to drink and go clubbing. So alcohol is fairly important, I haven't been out since January but I have tested it with a moderate six pints and was okay really. I'm constantly dropping down my steroids and have started an immunosuppressant; as well as starting to build up a tolerance to alcohol so that I'll be in partying condition by the time uni restarts. I really wish you the best, and my one piece of advice would definitely be don't let doctors fob you off and put you on the back burner. I'm really hoping I won't have this for life and the same for you, this disease really is horrible and makes you sacrifice doing the things you enjoy, but hopefully with that right treatment you can start doing those things again. All the best smile

    • Cazza12345
      Cazza12345 AnotherAccount

      Posted

      Hey, 

      That is horrible! I hope I don’t have it that long! My rash is getting better but there’s spots more appearing... I was told by the doctor that it goes away by itself. Have you tried vodka or gin? I would only drink that when I’m out and I’m hoping I can drink that. I’m not on any steroids or anything for it just antihistamines for the itch, paracetamol for any pain and a cream for the itch aswell. Has any foods triggered any of your flare ups? I really hope you get better soon! Thank you for your reply x

    • AnotherAccount
      AnotherAccount Cazza12345

      Posted

      I drink cider mainly and I haven't tried any spirits yet but I'll probably be trying vodka soon and maybe a few jagerbombs haha. Yeah the rash is definitely the weirdest symptom, it has never properly dissapeared but has shown improvements from time to time, it's way better than back when I was first diagnosed, my ankles looked like they'd been beaten with hammers or bats or something, there was pretty much no rash because my entire legs were the rash, and they were so swollen I could barely walk. All my really serious symptoms started in the first week of diagnosis, the worst was by far the abdominal pain, I've never experienced anything close to that. If you've made it through a couple of weeks or something without these symptoms you may have a caught a break and may have only have a milder form of HSP, I mean I'm no doctor or anything but everyone seems to have a different experience with it. Do the antihistamines or cream work btw? Sunburn is kinda bringing out the rash on my arms and it really does itch. As for foods I haven't found anything specific but I eat quite healthy regardless. Hope your get better as quick as possible too x

    • Cazza12345
      Cazza12345 AnotherAccount

      Posted

      Yea I must have a milder form of HSP because all I have is a rash and I did have really bad swollen feet and legs and could barely walk aswell, my feet are a bit swollen at the moment. I think they do work, I’m still itchy at times but I just deal with it and try not to itch it. The cream I’m prescribed is called Hydrocortisone 1% and the antihistamines are called Cetirizine Dihydrochloride. When I go to bed, I wet towels with cold water and squeeze the access water out and put them around my feet at night and I higher my feet with pillows aswell,  it helps with the swelling and stops itchiness. So does the rash never fully go away? Thank you so much xx 
    • AnotherAccount
      AnotherAccount Cazza12345

      Posted

      I've read a lot of peoples accounts with this illness and it seems to be a bit of a mixed bag, a few people have reported recovering but some say they've had the illness for decades. You may be okay if you do have a milder form and none of the other symptoms manifest. Steroids worked at initially preventing my symptoms from getting too bad when I was hospitalised from this but the side effects are awful and they don't seem to do much against the rash. I'm cutting them down fairly quickly as I'm tired of having a "moonface" from them and am waiting for the Azathioprine to start to work, if it has no effect on the rash I am going to request Dapsone; the rheumatologists are apprehensive about prescribing me this as it's toxic and has lots of nasty side effects. All I can say really is to take it easy, when I had the swollen legs at the start I still was trying to go to the gym or go to flat parties and things haha, it seems the swelling is more often than not the first symptom to go away x

    • Cazza12345
      Cazza12345 AnotherAccount

      Posted

      I’ve read that too, some people have it for months/years. It’s scary to think that people have it for that long. Thank you so much for replying to me it helped me and reassured me. I hope your steroids work and help you recover quickly. All the best xx
    • AnotherAccount
      AnotherAccount Cazza12345

      Posted

      No problem, I know it's scary especially when you're first diagnosed as not many people understand it and even doctors can't offer much information, glad to know I've helped a little. Good luck and all the best to you too x

  • taym13
    taym13 Cazza12345

    Posted

    Hey, I’m also 18 years old and have HSP! Sad to say but you’ll most likely have this disease for wayyyyyy longer than 4-6 weeks especially if you’re still in the stage of swelling and having the rash. I’ve had my HSP since March and it’s still here! My rash is gone down to a barely noticeable rusty colour and only on my calves and the only thing that triggers it to come back is drinking alcohol. I couldn’t go to work or school for a month and a half and I still needed time off but it got to be too much time. There’s honestly nothing you can do to speed this up , but avoid smoking of any kind (marijuana and  tobacco) and alcohol of any sort. Unfortunately I don’t think you’ll have this cleared by summer, they always say 4-6 weeks but every case has lasted longer than that, longer than 3 months!

    • Cazza12345
      Cazza12345 taym13

      Posted

      Hey, I’ve had this rash 4 weeks now. It clears up then comes back again but I’ve noticed the rash doesn’t come back as bad! The first time I drank alcohol with the rash it was very bad, I drank a few beers and gin and orange but haven’t went near them since... then the next night I drank vodka and sprite and it didn’t react that much at all. I was quite pleased to say the least! The next time I drank vodka and sprite again and it didn’t react I was glad and surprised! I really hope this clears up soon because I go out wearing jeans/trousers it’s different but when I’m going clubbing i would usually wear a dress or skirt but I can’t do that... I hope you get better soon! Thank you for your reply x
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