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

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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

3 likes, 36 replies

36 Replies

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  • chloe38149
    chloe38149 Guest

    Posted

    It's actually really reassuring to hear everyone else's stories and know you're all in the same boat! I went to see my kidney specialist today, and he's keeping me on the steroids for a while, but said my kidneys are alright! And off to a dematologist tomorrow for the rash that's currently covering my body! Hoping to get some form of steroid cream to bring it down a bit - has anyone tried this? It sounds vein, but the rash looks so disgusting and it's covering alot of my body at the moment, that it's really making me glum! I've definitely found alcohol causes flare ups and I'm trying to experiment a bit to see what else effect it! My consultant is adamant that it's nothing to do with diet, but I'm not sure! How often do you all get the rash is anyone else on prednisalone and getting side effects? smile

    • blueflamingo
      blueflamingo chloe38149

      Posted

      I had horrific side effects on prednisolone and it didn't help the rash at all. My consultant also doesn't believe it when I ask about different dietary things setting it off. My rash, joint pain and stomach pain disappeared when I started getting dapsone from my dermatologist.

    • av217
      av217 blueflamingo

      Posted

      Hi what wer your side effects on prednisoline? That's what I'm taking now!

    • blueflamingo
      blueflamingo av217

      Posted

      I had a lot...

      Heart palpitations - could feel every beat which was so uncomfortable and distracting

      Dreadful acne

      Weight gain

      Moon face

      Really vivid dreams/nightmares

      Affected my concentration and made me feel like I was just watching everything from a distance - had to give up driving because I couldn't focus and didn't feel safe

      I would have to be pretty close to dying before ever considering going back on that horrible stuff!

    • helen68675
      helen68675 blueflamingo

      Posted

      My son has now had HSP for a year, he's 16 and in his last year of high school so GCSE pressure looms. He still has blood & protein in his urine and a kidney biopsy has shown good results & they have no damage. The rash is still bad together with swollen & painful legs.

      I notice you have mentioned something called dapsone, do you still take it & how has it helped the HSP?

      We are beginning to get desperate to find something which will give relief to the symptoms. To say he's fed up is an understatement.

      The hospital have said a referral to a dermatologist & rheumatologist is now needed.

      Please reply with anything information at all.

    • mia09377
      mia09377 helen68675

      Posted

      im the same age as your son with hsp how long has his lasted ??

    • helen68675
      helen68675 mia09377

      Posted

      Hi

      I'm sorry to hear you are also suffering with HSP.

      My son started in November 2015 & had it quite bad. He still has blood & protein in his urine but attends a renal clinic where it is monitored. He has regular blood tests too. He takes Enalapril & Azathioprine & seems to be doing good. Is definitely better than in the early days as it no longer restricts him in any activities unlike before when he would suffer with either a rash or swollen joints.

      How long have you had it? I hope you are coping ok with it.

      Helen

    • mia09377
      mia09377 helen68675

      Posted

      ive had it for 10 months now and i also have blood and protein in urine its affected me kidneys now and have to have a kidney biopsy does your son still have the rash or is it just the blood and protein as im finding it hard to cope with my self image atm thankyou helen x

  • megan90476
    megan90476 Guest

    Posted

    I'm 21 and I was diagnosed with HSP 3 months ago but I probably have it the last 5 months. These posts are so interesting because like a lot of you alcohol makes mine flare up (especially wine). I was admitted to hospital with mine where they did so many tests, I had a skin biopsy carried out too! But every single one of my tests came back clear. Besides at the beginning of my hospital stay where I had blood and protein in my urine

    When I went back for my follow up appointment I asked whether alcohol had anything to do with it as I clearly had my suspicions as every time I drank it appeared. But my consultant told me that alcohol is nothing to do with it. Which now, after reading all these posts I find very bizarre.

    I was also told it would be fine after a few weeks but 5 months on and it still comes and goes.

    Two weeks ago I was admitted to hospital again with acute tonsilitis and my HSP flared up lots which was expected as they said it's linked to throat infections.

    I find the whole thing quite strange as though I know what I have, no doctor could tell me a direct cause and they told me it was very rare what I had.

    • blueflamingo
      blueflamingo megan90476

      Posted

      I've had HSP for around 8 years now. I quickly linked flare ups to alcohol but my doctor's refused to believe me. I KNOW it causes the rashes so I just avoid it now but I wonder why the doctor's are so against the idea!

  • natalie77410
    natalie77410 Guest

    Posted

    Thanks everyone for your tips. I don't drink alcohol at all now, even a sip triggers the rash. But I have had the rash almost every day for two years. Doctors are useless and nobody seems to know anything or want to help. I was told I would be fine in a week and two years later I'm still suffering. I am on Prednisone and would definitely only recommend a high dose for a short period (50mg up to 5 days) to clear a flare up. I was started on 50mg 7 months ago for three weeks as I was severely ill and I'm still trying to wean off it. The side effects are awful and not worth it AT ALL. I would rather have the HSP symptoms than the prednisone side effects - I still have the HSP symptoms WITH the prednisone side effects anyway!! I'm also on Imuran which made my hair fall out and gives me cold sores all the time and it's not even helping with the HSP. So over it!!

  • joshieh96
    joshieh96 Guest

    Posted

    I’ve had it for 3 years and it comes back sometimes! Alcohol makes it bad for me! I like going out with friends and drinking so makes it really hard for me! If anyone knows how to stop it when drinking it would be great. Last year it attacked my kidneys but now I just think it is the rash on my skin however it is still unpleasant!
  • natalie77410
    natalie77410 Guest

    Posted

    Hi everyone,

    I’m 23 and have had symptoms over two years now. I’ve been on prednisone and imuran for over a year and have just been told there’s now protein in my urine so my kidneys are starting to be affected. My doctor has looked into Rituximab which is a new drug they use for other autoimmune conditions but not approved for us because there’s (apparently) not enough people with it. Because it’s not approved it will cost around $7000 per treatment with no guarantee and may only last 9-12 months. I have heard dapsone can help but my doctors don’t seem to want to try it? I have also suggested tonsillectomy and plasma dialysis but again they don’t think it will work. 

    I found eggs triggered stomach symptoms for me and I feel I should cut out other food groups but it’s hard to do!

  • andre48633
    andre48633 Guest

    Posted

    Hello

    Just wondering how are you doing right now .. with this disease..thanks 

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