HSP After Two Years

Edited , 4 users are following.

Hey, so I wanted to write this post addressing anyone who is currently suffering from HSP especially people who have been diagnosed later in life as I know how much of a painful, lonely, isolating experience it can be. I've had HSP for over two years now and it still persists but it has diminished a lot, thankfully.

I was diagnosed not long after my 20th birthday, at first the rash appeared and I panicked because I thought it resembled meningitis, and around that time students were dying from a particular strain of meningitis so I was quite alarmed. When I was diagnosed with HSP I really thought nothing of it, I had never heard of it before and I was just happy I didn't have meningitis, as well as the fact that the doctor told me that kids primarily get the disease and it disappears over the course of a few weeks. I was honestly only annoyed that I couldn't go clubbing for a few weeks. That attitude quickly went away when my legs went purple and I could barely walk, a few days later I was up all night with intense abdominal pains and ended up in hospital back at home away from uni.

Over the course of my little stint in hospital I had the multiple different scans and tests and endured the worst pain I hope I will ever experience. Morphine couldn't touch it. Despite that I know I'm one of the luckier ones as HSP can develop many horrible symptoms some of which can massively reduce the quality of life. Anybody suffering from HSP you honestly have my deepest sympathy because I know just how physically, mentally and emotionally painful not only the disease itself is, but also the side effects of the many medications you have to take, as well as the huge changes you need to make to your life to adjust to having the disease and how you just generally feel like you're sleepwalking through your life.

If there's one piece of advice I can offer it is never take what any doctor, gp, etc. says on face value, as harsh as it sounds you are ultimately just a number to them, there are many cases like you and you are not treated like an individual person, just a problem for them to remedy in the cheapest easiest way possible, not necessarily the most effective. The only reason I managed to be treated with the medication I believed would be the most beneficial to me personally is because I searched for it. I looked for clinical trials or specialists across the country. Ultimately this is worth traveling for, it's your life at the end of the day. Contrary to what I've just said there are some wonderful specialists and doctors out there who will give you the time of day but it's more than likely you'll have to reach out to them. I got lucky and ended up finding a specialist near by who was connected to the university I was attending prior to my diagnosis.

Two years on I do really feel better, I still have to contend with the rash every now and again but it's only really bad when I drink, fortunately my medication prevents it from happening that much. But most days I don't take any medication whatsoever anymore. HSP is sometimes a constant consideration I have to be concerned about when doing certain things...namely drinking. But other than that please take this post as just a little bit of a hope that things truly can get better, I really didn't believe at all during the initial stages but they really can get better. I used to use these forums to find any info I could so I thought I should probably at least post this to offer a bit of a light at the end of the tunnel for anyone else.

Anyone suffering you really do have my best wishes and deepest sympathies. I am going to check on this post from time to time and respond to any questions if anybody has any. Honestly things can get better, keep your chin up.

2 likes, 9 replies

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9 Replies

  • Posted

    thanks for sharing. that means a lot! i'm only 8 months off medication and haven't had alcohol in 3 years. still watch for the signs of a rash every day though. its nice to know (although also sad to know) other people have this too!

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    • Posted

      No problem! I only drink occasionally now and have to be very mindful about how it may cause the rash to manifest as it seems to be the largest contributing factor. So if I'm going on a night out or just having a few drinks in a pub or something I really need to be on medication, other than that I thankfully can be fairly relaxed about not taking any medication at all. I hope your condition continues to improve, and yeah I know what you mean it is nice to at least know you're not the only one suffering, I really feel bad for anyone going through this so thanks for replying, I didn't know if anyone would respond so I'm happy that my post can be helpful even in a small way 😃

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  • Edited

    Sorry to hear. I was 24 myself when I got my first symptoms, no doctor initially understood what it was all about until I got to the skin and allergy hospital. There, they only diagnosed HSP, but did not know the cause. The doctor also laughed at my suggestion as to whether it would be something I eat. I had browsed the internet a lot before that (in 2011/ 2012), but at that time there was very little information about it on the internet. However, I found a wife’s post on a forum and she said that her husband gets petechies every time he only eats cheeseburgers. So there is certainly not much talk about it, but I think the poor general bowel condition combined with some allergenic protein (in my case also milk/casein). When the disease is "on", it is exacerbated by, for example, cold or even just drinking beer. After removing the tonsils in surgery (the largest overactive immune system in the body) and removing all dairy products from my diet, the disease has been in remission for 8 years. Hopefully this would evoke thoughts in you.

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    • Edited

      Thanks for your response! The disease is so rarely diagnosed beyond juveniles that it isn't initially considered much. It must have been very difficult during that period with such a small amount of information being available, I remember my dad and I scoured the internet to find anything that might be useful, so it must have been tough to not have such a wide variety of resources at hand back then. Funnily enough my dad immediately mentioned about that in certain cases of HSP people either fully recovered or at least had certain symptoms ameliorated by removing tonsils, I remember the doctor dismissed him instantly. But it's something that I would definitely consider having done, your account only strengthens that. In terms of diet the only thing that gets a reaction from me is alcohol and it is usually a very large reaction, that is if I'm not currently taking medication, if I am then it's fine. Thanks for your response, I appreciate people taking the time to give their thoughts on this, I'm happy to hear that you have been in remission.

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  • Edited

    I would like to add that: if the condition of your gut has deteriorated (for example due to poor diet), its permeability is also higher. For example, milk is full of hormones and two different proteins, so when they enter the bloodstream, an overactive immune system can malfunction. I recommend reading about "IgG and IgA". Of course other foods are also good to think through, but as I said, in my case it was the casein.

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  • Edited

    I agree about the doctors. Took me more than two years to get a diagnosis as my GP kept sending me away. Eventually, I took myself directly to A&E and by luck the on call doctor was a rheumatologist and he agreed to see me.

    I'm now at 11 ish years of active HSP and have had no remission. My medication masks the worst symptoms so, whilst not flaring I can live a fairly normal life, but if I miss one day of medicine, the rash is back.

    I read about the tonsil removal and showed the research to an ear, nose and throat specialist. They agreed to send me to have my tonsils removed as I've always had enlarged tonsils. Months later, I got as far as laying on the bed in hospital and then the surgeon that day said he wouldn't remove my tonsils based on an idea. He wouldn't even read the research papers I had with me or acknowledge several other doctors had approved the procedure. So I got discharged and that was the end of that. Sigh.

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    • Posted

      it took me over 5 years to get a diagnosis and treatment. the last 6 months of which i went to a therapist for as the lack of diagnosis made me think it was all in my head. i will not tolerate being dismissed as easily anymore! but boy do i wish i didnt have to have gone through that.

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    • Edited

      I am so sorry to hear that that is the way you have been treated by doctors, it is absolutely inexcusable to dismiss someone who is in such an awful situation. The only advice I can give is absolute persistence if you wish to take that road again, I'd just be thinking if that surgeon who refused to remove your tonsils had HSP or something similar I am sure they would want their tonsils removed immediately and would do anything within their power to treat it. Ultimately these doctors, surgeons etc have absolutely no personal investment in someone else's circumstance so you just have to be absolutely relentless with them, scream, ball, cry, plead, beg etc. It's your life, and you should have the say in this especially when you've presented them with studies and other specialists testimony, I've been in similar situations myself. I'd say if even a percentage of you still has an interest in exploring that avenue, do it. And don't take no for an answer because I'm sure those doctors wouldn't if they were in your shoes. I really do wish you the best, I hope you can find something that can help you through this.

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    • Posted

      yup i definitely know what to do for next time! but i just had no perspective on how ill i was. i was mainly concentraing on walking to and from the doctors office. somehow fighting in it didnt really register. now i have a better perspective 😊.

      thats interesting about the caesin allergy. ill have to read up more about it.

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