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HSP in adults

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Honey456
Honey456

Hi,

I just thought I would share my story so far...

I am a 24 year old female from the UK. The first signs of HSP started after Christmas with small red dots on my feet. I don't recall having any throat infections although I was going through a stressful time, which I believe may have triggered it.

After a few weeks of these dots not going away and gradually spreading up the bottom half of my legs I visited my GP who initially thought it was a bacterial infection from shaving and prescribed me with antibiotics.

The spots did not go away or get any worse until I went out drinking one weekend in March for my friends birthday, on the Sunday the rash was the worst It had ever been. That same day I went to out of hours surgery and seen a doctor, this was the first time I was told It was HSP and was given 25mg prednisolone to take for 5 days.

The rash did clear up but not completely and after a few days of not taking the steroids the rash flared up again and I started to get joint and stomach pains, I was constantly waking up in the night feeling nauseous and completely lost my appetite.

I went back to my GP who referred me to a Rhuematologist and put me back on steroids in the mean time.

On my first appointment with the Rhuematologist I was put on a higher dose of steroids which completely got rid of the joint and stomach pains however not so much the rash I am still getting random flare ups and I have no idea what causes them other than being on my feet for too long. The rash has also spread to the tops of my legs and around my elbows and forearms.

I have recently been for my follow up with the Rhuematologist and he was quite shocked I still have the rash and was hoping to start reducing the steroids.

I am currently still taking 40 mg of prednisolone, I am on my third day of no flare ups and trying to stay positive. I am really focusing on resting as much as I can and eating healthily which I am hoping clears this up once and for all!

0 likes, 21 replies

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  • lucynewas
    lucynewas Honey456

    Posted

    Sorry to hear about this - have you been put on steroids because of kidney inflammation?  Otherwise the treatment is watchful wait usually?
  • steph76194
    steph76194 Honey456

    Posted

    Hi Honey,

    Really good to read your story. It is good to hear that the steroids have helped with the stomach pains...this is the worst bit of my daughters relapse this time...8 weeks of excruciating stomach pains....we are seeing the consultant tomorrow so lets hope stronger meds may help her get back her life at least so that she can attend school and enjoy being a young teen ! She tried prednisolone before and it reacted badly with her but maybe there is an alternative? Also she is on floradix supplements as i am determined to build up her immunity....

    Wishing you a continuing speedy recovery. X steph

  • blueflamingo
    blueflamingo Honey456

    Posted

    Hi,

    I'm in the UK too. Seems you were lucky with getting a diagnosis and treatment so quickly. It took me 2.5 years! Prednisolone did nothing for me.

    You mention a rhuematologist but not anything about kidneys. Please ask for referral to a nephrologist and ensure they do more than 6 monthly urine tests. Mine only did that for five years and when I finally changed doctors my new one was horrified I hadn't had a biopsy. Turns out 15% of my kidneys are now unrecoverably damaged and I was immediately started on a medication for the kidneys (I'd previously only been on medicine for the rash/joint pain/stomach pain). Hopefully this will at least warn you to look out for this.

    Also alcohol is a huge trigger for the rash so if you cut it out you'll probably see an improvement. For me, keeping active was far more beneficial than resting.

    • Honey456
      Honey456 blueflamingo

      Posted

      Hi,

      Thanks for your reply.

      Sorry to hear this, sounds like you've had quite a bad experience. My kidneys haven't been affected so far, although I'm worried they will be if it doesn't go soon.

      I'm not sure if it's a nephrologist but I have been referred to a different specialist for a biopsy next week.

      How long have you had HSP? And what medication are you taking if you don't mind me asking?

    • blueflamingo
      blueflamingo Honey456

      Posted

      In October I'll have had it for six years. I did have a small patch of remission in the middle but it came back much worse after a few months.

      I've previously been on prednisolone and azathioprine. Neither did anything useful.

      I'm now on dapsone and MMF. Dapsone was immediate and almost completely stopped the rash/stomach pain/joint pain (as long as I don't drink alcohol). MMF is for my kidneys so no noticeable effects from that.

      Usual biopsies would be skin or kidney. A skin biopsy would only assist in confirming a diagnosis. Kidney biopsy would look at current level of inflammation and scarring. If there's evidence of active inflammation, they might want to start you on medication to reduce the risk of long term damage. All my blood tests and urine tests were normal and yet they were being damaged.

    • Honey456
      Honey456 blueflamingo

      Posted

      It seems like this condition is going to be more long lasting than I thought. I've been reading through a lot of forums and this disease doesn't completely stop for many adults.

      I will definitely speak to my specialist about going on Dapsone if the steroids haven't cleared the rash by the time I go back. Do you get any side effects from taking either of them?

      I'm having a skin biopsy this week and it does seem a little pointless as I'm pretty sure I have HSP. I'm so glad you've said about having a kidney biopsy as my specialist never mentioned this before.

      Thanks for

    • Honey456
      Honey456

      Posted

      *Thanks for all your help and advice smile
    • blueflamingo
      blueflamingo Honey456

      Posted

      Yep my skin biopsy was pointless. Results just said there are indications of some kind of vasculitis. Useful! And now I've got two more scars from that on my leg.

      I didn't have any physical side effects from the dapsone but it does have to be carefully monitored because it causes anaemia. MMF gave me an upset stomach for a week and makes my hair fall out but this latter one is apparently quite rare. I've been on it 4.5 months and the hair loss is noticeable to me because of the loss of volume and hair coming out when I brush it etc but I don't have big bald patches and no one else can tell.

      They may not want to do a kidney biopsy yet but just keep on at them if needed to get under the care of a nephrologist. I've currently got a nephrologist for the MMF and a team of dermatologists monitoring the dapsone at another hospital. And I've previously been under a rheumatologist (and a crappy nephrologist that didn't do what was needed).

  • Honey456
    Honey456

    Posted

    Think I spoke to soon! Rash has flared up again this afternoon around my knees sad

    Sorry forgot to say, I am having weekly blood tests and all have came back normal so far. I've heard the longer you have HSP the more likely it is to affect your kidneys, really hope this isn't the case.

    Steph - I am sorry to hear your daughter is suffering with this. The stomach pains were the worst part for me too. I am starting to see side effects of the steroids (bloated face and acne). I have been looking online for alternatives and there are some immunosuppressant drugs that have shown good results with hsp, Dapsone and MMF. Might be worth discussing this with your consultant. Hope all goes well and she feels better soon.

    • blueflamingo
      blueflamingo Honey456

      Posted

      Yes all my blood tests are still normal and I was having weekly tests. You can get a lot of kidney damage before anything shows up in blood tests. So keep in mind asking for a biopsy if it goes on for more than a few months. Dapsone is amazing (for me - changed my life) but lots of Doctors haven't heard of it being used for HSP.
  • mallory35643
    mallory35643 Honey456

    Posted

    My rheumatologist recommended less salt, on my feet less, less sun, less heat, no smoking of any kind (this was major) and definitely less drinking or none at all. My rash is still around when I'm tired, have any kind of cold or anything or on my feet to long.
  • helen68654
    helen68654 Honey456

    Posted

    Hi - my 16 year old daughter developed HSP  in Octtober and though she no longer has the rash, she still has fatigue, dizziness, terrible joint pain and cognitive difficulties.  She's seen rheumatolgy too and they are now sure that her's is something on the cfs / fibromyalgia spectrum caused by the HSP and is being treated at the Mineral Hospital in Bath.  The only advice I can really offer is rest, never doing more on a good day than you would do on an ok one.  SHe has had Bowen treatments weekly since this started and they gave her a boost.  She wasn't given steroids but I know they can make you feel rough too so I do symptahise.  SHe's on massive painkiller doses of naproxen plus nortriptyline in the evenings to ease the muscle pain to try to help her sleep.  We have found that very few doctors seem to have much knowledge of hsp so if you are unhappy about the way things are going - ask for a 2nd opinion!
  • sarah91621
    sarah91621 Honey456

    Posted

    I got diagnosed with hsp and after months of daily flare ups i was prescribed dapsone in february this year and havent had a flare up since
  • sarah91621
    sarah91621 Honey456

    Posted

    Go to a dermatologist i seen a rheumatologist and they did not know how to treat it i went to a dermatologist and i was prescribed dapsone that cleared it up

    • blueflamingo
      blueflamingo sarah91621

      Posted

      Exactly the same with me. My rheumatologist was doubtful even after I said dapsone from the dermatologist worked. Can I ask how much dapsone you are on?
    • sarah91621
      sarah91621 blueflamingo

      Posted

      100mg daily, i was started on just 50mg a day along with steroids and up to 100mg once i stopped steroids, i dont think hsp is meant to be treated by rheumatologist i was admitted to hospital in feb and rheumatologist came to see me and passed me onto dermatology i havent had a flare up since
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