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I have had Urticarial, hypersensitivity vasculitis for 4 years now in November, trying to get a diagnosis has been a nightmare. I am 45 years old. For the first 2 years I was diagnosed with idiopathic urticaria and tried on loads of medications. None worked so they sent me for a biopsy this confirmed Leucocytoclastic vasculitis.
I have pressure urticaria on my feet and if I wear anything with a waistband or shoes I swell up and itch- which means loose elasticated waists and trainers or flipflops - attractive!
I also have angioedema which makes my throat and face swell up - even more attractive!!!
Still trying to get medications right, so far I am on Fexofenadine, double dose 360mg, Tranexamic acid, hydroxyzine, various other antihistamines some prednisolone, back at hospital tomorrow and I think I am in for Dapsone to add to my collection.
I have never found anyone else who has what I have so Im soooo happy to find this today. I dont seem to have the red spots on the legs, I get giant urticaria all over my body and they itch and burn like mad, especially on the inside of the top of my arms and inside thighs. If I lean against anything I get weals when I am really bad. All the meds keep it sort of under control but I was poorly at Christmas with flu and it all came back with a vengence and it has taken it 6 months to start to calm down again, so the lady with the bladder infection, that could be why you feel more poorly at the moment.
I have read everything I can find on this condition as even the hospital dont seem to know quite where it is going to go. I have regular bloods but they cant get my inflammatory markers down even with all the meds yet.
They wanted me to take chemo type meds but I said no so I have started on all the ones with less side effects and now they are pulling out the big boys to try and get it all under control as none have worked.
I developed gastro problems this year and where I havent had a camera isnt worth mentioning, I am bleeding internally but no-one can find where and why? The doctor and I think my insides swell and bleed but everytime they try and catch it on camera it has stopped as it is intermitent. I get fatigue all the time which I know is part of the condition and at times complete exhaustion so I go to bed as soon as I get in from work. My hair falls out and I get night sweats at times and as I live in Yorkshire its not due to nice sunny weather!
You need to be strong with the hospital and your doctors and research everything they give you. I do loads of research and find this has helped me make decisions on my meds. I have a fantastic GP though and she really helps me manage my condition.
My best advice is to take it easy on yourself, dont do too much if you can help it, if you get stressed or work too many hours you will know about it.
If you get sick with something else you will feel generally crappy for ages after. Immune system knackered and I work in a large office so hand gel is a must in winter to try and keep the bugs at bay. Find a sympathetic doctor.
I have felt completely alone with this condition as I have never come across anyone else with it who understands quite how rough you feel each day. So thank you ladies for posting your comments, you have made my day!
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