23yr Old HSP (Student at Uni) IT DOES GET BETTER!!

Posted , 18 users are following.

Hello All

This post is aimed at the slightly older people who have got HSP...

Im a 23 year old student at Universtiy in the UK. I got HSP while i was on holiday in the states. It started off with the red spots on my ankle and then spread untill i had a really bad rash all over my legs and on my waist aswell as around my elbows. My fingers, ankles, toes, elbows and knees would all swell up and i had to take IBUPROFEN every 6 hours just to keep the pain at bay.

I wont bore you all with the details of what the docs said and how i came to know i had HSP but basically after trial and error i was able to pin point some triggers that would set me off:

Chocolate, Smoking, Drinking, Food with additives and preservatives in, Tight clothing and getting hot from walking to Uni or playing sport.

After even more trial and error and a few months i was able to drink Vodka and cranberry as theres no additives or preservatives in either and i can now smoke 'American Spirit' Tobbaco (which you can only buy from tobacconists)

As a 23 year old student who enjoys partying and socialising it was a pretty big shock to the system as i could no longer go out and do what students do.

Just wanted to post this to let anyone who is in the same position as i was ( a student at uni who drank and smoke and then all of sudden could not go out had to eat a strict diet couldnt get worked up or hot) just rememeber that i had the same thing happen to me and now 5 months down the line im back to normal and everything is OK! Yeah it is very annoying and painful and can really get you down but just remember it does not last forever and will get better!

Thanks

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  • Posted

    Hi there,

    I'm 24 years old, i was diagnosed 4 weeks ago and i' really beginning to struggle with the condition. Thank you for your post- this condition is really beginning to get me down and its nice to know that there's someone else my age can shed some light on the condition.

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  • Posted

    hi

    thank you very much for the post

    I'm 25 years old and 2 weeks ago i have been diagnoses with HSP

    i have one question and i really need an answer dose the rash go cuz it's all over my body?? and how long dose it take?? did you use anything for it???

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  • Posted

    I was so happy to read this , you have gaven me some hope, and i smiled when you pin pointed what causes your hsp because they are some of the same things for me too , however i didnt know about the chocolate one , and i eat tht all the time!

    Alcohol is the biggest set off for me , i have found vodka is actually really bad for mine espec the WKD's.

    I am 18 and that point in my life where i want to go out partying , its very fustrating, just dancing or on my feet for so long my knees swell up and my legs become itchy .

    The way i have dealt with it is by using Aqueous cream and low steroid cream. Pain killers for the pain and Ibrufon for swelling and not drinking.

    The Rash should turn in to like a bruise, purple within 24 hours but still visible. (Iv heard)

    I hope i grow out of this , iv had it for 3 years but gotton worse last year.

    It started on holiday the same as you .

    Thanks

    dont hesitate to ask anything im really interested in other peoples conditions and any cures people know of ...

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  • Posted

    Thanks so mcuch for the above posts, I thought I was on my own! I am 22 years old, female, and have had HSP for the last 2 years or so (can't actually remember when it first came up because I left it for a while before going to GP). I haven't really had any joint pain, although do get achy knees at times. I haven't had any abdominal pain either. My problem is the rash - it has been constant for the last 2 years, it comes, fades then comes again. They are red / purply spots about 5mm in diameter. I have noticed as well that more appear after I have been drinking, exercising or been on my feet for a long time - think I will start drinking Vodka and Cranberry (wine tends to make mine worse). It's rubbish and I don't want to have to give up drinking and smoking when all my friends go out. I am also really paranoid about going on holiday because pressure stockings dont seem to help the rash - does anybody else know how I could get rid of the rash?

    My GP has been absolutely useless, he hasn't even asked me to go and give regular urine samples even though they found blood in my urine when I saw the dermatologist. I have seen a kidney specialist but he didn't do anything other than schedule another appointment in the next 6 months.

    There is hardly any info on the web about HSP or it's causes or treatment, I don't think anyone knows much about it to be honest, but it is nice to know I am not alone! Lets hope they come up with some kind of treatment.

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  • Posted

    Nice to know there are also other people my age who suffer from HSP so thankyou for making it seem better

    I'm 18 and have had it for about 6-7 weeks. It makes me so sad as its so hot and I cant show my legs off. I've had no aches and swelling just the rash which extended all over my thighs and bottom half of my legs for about 3 weeks, now I occasionally get the odd spot around my ankles and feet. I have marks where all the spots collated which look like scars, do you know if these fade? I was told the rash should disappear within a few weeks though this does not seem the case as it keeps coming back. Luckily my kidneys have not been affected yet but my self confidence has plummeted. Im in the middle of my a levels so it has not been good, does alcohol have an effect on the rash?

    thanks shefali xxxx

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    • Posted

      Hello, I was diagnosed with HSP about 9 weeks ago. The rash is now in the brown spots/bruise like scarring phase. I was wondering did yours ever completely go away? Do you still get flare ups?

      Thanks,

      Julianna

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    • Posted

      Hi Julianna,

      Yes unfortunately I do get flare ups but I have come to realise it is only ever when I consume alcohol. Specifically wine. I'm currently in the middle of testing out different alcohol to see what way it will react with my body and at the moment it seems to be just the wine.

      I suggest you do the same. If you think that there is a food or drink that you may have your suspicions about causing a flare up try excluding certain ones and then reintroducing them.

      The doctors told me it would go away in 4-6 weeks, five months on and it's still here. But like I said when I don't drink wine it's completely clear, however when I do, the HSP is very aggressive on my legs.

      The only ever time I get it is if I have a bad infection particularly my throat. Just over a month ago I was admitted to hospital with acute tonsilitis and streptococcal toxic shock syndrome, so as you can imagine I was extremely unwell. But due to this infection my HSP flared up which wasn't actually surprising because when I was first admitted to hospital with HSP every doctor that saw me asked if I suffered with my throat, so there is obviously a link there between throats infection and the HSP.

      Apologies for the long winded answer but I hope this helps you in whatever way!

      Megan.

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  • Posted

    I thought I would add my experience as I'm a similar age (25).

    I had a throat infection and some severe vomiting but it disappeared quickly without medication and I thought nothing of it. One week later my knees were beginning to hurt (not unsual of itself after a lifetime of sport) and I was struggling to move. One evening after work I noticed the rash on my legs.

    Seeing that the rash was non-blancing I automatically thought of meningitis, especially given me previous bout of sickness. After a trip to A&E and a lot of tests through the night no one could work out what was wrong with me and I was eventually discharged.

    I remained that way for a week and then the rash began to fade, though the arthrictic symptoms persisted.

    One morning though I just couldn't move the pain was so intense. My back was in extreme pain ( I thought it was an old sporting injury) but I then realised it was my kidney area. The rash on my legs had come up again but even worse this time.

    After another trip to hospital it took the senior registrar to diagnose HSP. I really couldn't walk very well so I agreed with my employer to work from home. I made a mistake in working in between the two episodes though as so much blood built up in my feet that they became swollen. They then rubbed against my shoes and broke the skin to the point where I got a secondary infection in my feet. I couldn't walk at all after that.

    The pain caused by that was so bad that I had extreme nerve pain when I raised my feet (such as laying in bed). It felt like someone was stabbing me repeatedly. I had to take medication to clear up the secondary infection.

    After three weeks the rash began to fade and my arthritic symptoms abated. After 4 months the rash disappeared completely.

    I didn't suffer from any long term kidney problems but I do have some terrible scars on my feet from where I got the secondary infection.

    I'm always worried about a repeat, and I'm often terrified of getting a throat infection, which seems to be my trigger point. Overall though no lasting damage - you'll also find you are a medical curiousity to your family and friends (and often the medical profession as well!)

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  • Posted

    I found out that I have HSP a week ago after what I thought was a heat rash and a night of drinking turned my lower body into my blobby. I headed to the doctors.

    With a high social life and a love for binge drinking I thought this was it - time to find new friends that don't drink so I can get better. Which is harder than you think in British youngsters. But with the option of change or chance of kidney biopsy I decided I'm going to try at least.

    I am glad you say it gets better as currently I'm walking on my feet all day and by end of the day I can't move my feet are fat, swollen and achy. Unfortunately due to the kidney issue I am not allowed to take tablets so I'm just trying to get on with it.

    by being boozy defiantly doesn't help, smoking doesn't effect it however. But I do have to eat as much fruit and veg in order to up my immune system. It's all a big shock but I'm glad to know it get better. What's the longest anyone has had it for? 

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  • Posted

    Hello! I know I'm a little late to this post, but I just wanted to say it's really helped me. I'm 24 years old and was recently diagnosed with HSP, after getting the rash for two years. This has also lead on to me being diagnosed with kidney disease. At first i was just happy to have a diagnosis, but now its just frustrating - and its not to know other people have it too! I enjoy going out and having a drink, but I'm strugging with my HSP because the rash is so bad on my legs, it just looks awful. I've been on steroids, which initially got rid of the rash - but the side effects were horrible. And the rash has since kept coming back! I know its been a year since this post, but I wodnered how youre getting on now? And if this is still affecting you? smile

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    • Posted

      I was just diagnosed with this last week after many many trips to er for severe stomache pain and rash.....Dr's kept saying it was ulcers and scabies until finally I went to a different hospital and they admitted me to icu for a week....they put me on pantoprazole and prednisone...so far so good...I had the rash up my legs,butt, stomach and elbows really bad....I was under the impression this was relatively easy to cure until I come across everyones posts on here....hopefully the meds keep working and I don't wind up with kidney disease myself...sorry I'm sure none of this is helpful for your case but it's sure nice to know I'm not alone..if ya need to talk I'm here

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    • Posted

      Hello, I was diagnosed with HSP about 9 weeks ago. The rash is now in the brown spots/bruise like scarring phase. I was wondering did yours ever completely go away? Do you still get flare ups?

      Thanks,

      Julianna

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  • Posted

    Hi,

    I'm 24 years old and I just got HSP again a week back. I had gotten it when I was a kid and the stomach pain then got me worried this time! So I ran off to the doctors before the stomach pain started. I asked the doctor the cause for HSP and he told he doesnt know! He says medicine has not found an answer yet! 

    I'm guessing this is a part of life now and its weird how everyone in this post are of the same age group around 18-25, most of us drink and smoke..so could it be...?

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    • Posted

      I'm 27 so close enough lol....I quit smoking but the night before the agonizing stomache pain started I had polished off 2 bottles of wine....so what do you do for the pain? Tylenol doesn't seem to help but my Dr refuses to give me anything stronger

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