I believe I have Chronic Hives, about 10 years ago a orangey red patch started forming on neck, didn’t think much of it. A couple years later, it started spreading. There was no symptoms at this point other than the visible rash, no itchiness. A couple years later and it has spread across my stomach, down the sides of my body, my back etc and one day, i randomly started flaring up and it’s been that way ever since. My skin feels like it’s on fire, it’s not just irritating, it’s excruciatingly painful. There’s been a few occasions I’ve been to my GP, they’ve never actually diagnosed me with this, they’ve only given me a steroid cream which only helps visually, the rash goes but the inflammation doesn’t and now any sort of cream would be difficult to apply, given I now live alone and my back being the worst part. I also work nights, so finding the energy and motivation to get this sorted is hard, especially after a night of so much pain. Exercise/work and heat tend to be the main triggers for me.
I’m not sure if I’ve explained very well but does this sound like hives?
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Neal94ynwa
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I’m not sure from your description whether this is hives, but if it is I had chronic hives for 3 years about 10 years ago and the only thing that worked for me was taking antihistamines. I never found the trigger for it, but if I didn’t take an antihistamine every morning then I’d get a hives rash appear somewhere or everywhere on my body. It eventually self resolved. Mine presented as a typical hives rash with the bumps on the skin and itchiness.
Hope you find answers and something that works for you! Creams didn’t work for me, they just helped soothe it but never actually got to the root of it. There are endless different rashes and autoimmune conditions (amongst other things) that can cause them however so worth trying to get someone who knows what they’re doing looking at it. It might be possible to send a photo to a dermatologist if you’re unable to see one in person.
Best of luck and I hope you get to the bottom of this. Hopefully something easily treatable once it’s accurately diagnosed.
That’s why I’ve wondered if it really is hives because people who have had it have described as the rash disappears and reappears during a trigger, but mine is always there and during a flare up, it just gets darker, more aggressive.
I’m currently trying to be referred to a dermatologist, but you know, with covid etc kind of hard. I also take antihistamines everyday, I use clarityn but I’m starting to think shop bought ones aren’t doing anything and need to get some prescribed as everyone I’ve spoke to have said they’ve never heard anyone to have this for a decade now.
I tried a few prescribed antihistamines before I found one that worked for me to keep the hives at bay. They started just in small patches but eventually if I ever skipped a day or was late taking my antihistamine I’d be covered.
If you’ve got urticarial vasculitis, which tracks with your symptoms of it being like hives but burning and painful (only assuming it could be as we’re in the vasculitis channel, but there are likely many other things it could be other than this), then my understanding is antihistamines would do very little, though I’m no expert in this area at all, just someone who has experienced years of hives and more recently been diagnosed with vasculitis.
Yeah that’s the frustrating part, knowing there’s 100’s of conditions it could be. Only one way to find out I guess, need to get in with a dermatologist asap. Thank you for the advice, I appreciate it
Never used that service before but in your position it’s probably something I’d try whilst waiting for an in person appointment. Online is limited but they might be able to narrow things down for you.
I have had 3 VERY bad, whole body attacks of urticaria (hives). They took a good while to subside but eventually a dermatologist identified NSAID's as the cause. Since stopping taking aspirin and nurofen I have not had another attack.Good luck
I have had urticarial vasculitis for over 20 years. Your description sounds very much like it, especially burning. Mine got triggered by cold damp weather in winter initially. GP thought I had chilblains but two winters later my toes started swelling so I insisted on having blood test done. Inflammation was detected and I was referred to the Rhuematology dept which initially treated me with steroids which in the long run was a bad mistake as starting with strong drug means less damaging one wouldn't work as my body got used to it.So I think you need to insist on having blood test done first for inflammation.
If you are diagnosed with urticarial vasculitis, hopefully they will try you on Hydroxycholorquine. It took me fourteen years to get to this drug after doctors trying so many strong drugs on me. UV is very tricky to treat and you really need to find a specialist. So best to get referred to a big hospital with a good dermatology or rhuematology dept. Do not postpone as it will not go away and it will only get worse as time goes. BTW, I tried so many antihistamines that doctors gave me and nothing worked until I tried over the counter Piriton and it worked much better to my surprise. To cool your hive areas, try organic aloe vera gel. Good luck
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Bechet's disease? 
ANCA POSITIVE 
Could this be Vasculitis?
Possible vasculitis diagnosis looming...
