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Hypersensitivity/Leucocytoclastic/Urticarial Vasculitis

Posted , 22 users are following.

winter64
winter64

Hi,

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!

2 likes, 21 replies

21 Replies

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  • Crowneagle
    Crowneagle winter64

    Posted

    Your story is almost exactly like mine. Please contact me asap. 
  • BeachLife
    BeachLife winter64

    Posted

    Hello, I must tell you how relieved I am to have found this discussion. The diagnosis process has been anything but easy. I was officially diagnosed with Urticarial Hypersensitive Vasculitis in January of this year. I am 27 years old and unfortunately dealt with the unfortunate misdiagnosis over and over again one year prior. This of course lead to ER visits and being on high doses of prednisone for just about a year. Currently I am being treated with Dapsone, I was using 4x's the amount of antihistamines but was able to have the doctors help ween me off. Unfortunately it's always a guessing game as to what is causing the flare ups, alcohol, stress, hot and cold weather, sunlight, having your period; but I have to be honest I'm terrified of having another flare up. The burning and stinging all over my feet, legs, back, arms and chest, the swelling, pain, and it somehow managed to effect my nerves?!...it felt like random lightning bolts all over my body. Clearly the physical aspects of vasculitis are awful but how do you manage the emotional? I can't get the fear of more flare ups to go away. Hope everyone here is doing well with their vasculitis.

    • paul38503
      paul38503 BeachLife

      Posted

      Hi,

      I have chronic continuous urticarial Vasculitis.

      After years of visiting dermatologists I discovered this is an immunology problem & now I visit the immunology dept at the hospital.

      Recent studies prove antihistamines are in effect against ccuv. I was on very high dosages of prednisolne ...80 mg per day & then taper. Rituximab is currently the most effective drug but it's very expensive. Biosimilar Rituximab has been approved in the UK.

      Good Luck. Paul

    • kaycee1985
      kaycee1985 paul38503

      Posted

      I am diagnosed with chronic continuous urticarial Vasculitis as well, it has been 2.5 years and never stopped for 1 day and the condition is getting worse day by day and I rely on steroid. managed to stopped steroid for 1 month and break out again recently, now on Prednisolone 5mg x 2/day but not improved much yet. Dr asked me to take 16mg dose but I just wanna try myself.

      after reading this forum, I feel that im not alone but i feel stucked at well, seem no solution to cure our problem, I feel so bad. Im planning to be on vegetarian and hope its better, bcoz i dunno what to do now. 

    • kaycee1985
      kaycee1985 BeachLife

      Posted

      Sorry to hear that, I experienced mostly same but only on my limbs, thats the worst feeling ever that noone can understand. Im terrified to think of the day my all limbs turn into drak red bcoz the blood vessel was all broken and noone and I have to fly to Malaysia for ER. I had experience 2 times like that and it was so terrible.

      I cut off fresh milk and felt better for a while, today its bad again so Im thinking to become vegeterian

  • paul38503
    paul38503 winter64

    Posted

    Hi Winter,

    How are you now ?

    I ask this cos it 7 years since your post.

    Cheers,

    Paul

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