Uticeral vasculitis

Hello there please can someone help!?

Around a year ago I had septicaemia and was left with uticeral vasculitis. My symptoms one and go but have never really fully gone. My legs and armpits are so itchy, Sore and bruised! I'm on antihistamines, steroids creams, steroid tablets, sleeping tablets and a moisturising cream from the hospital. I feel like my body is aching all the time and in so much pain! I'm so so tied but I'm having trouble sleep because of my symptoms! What can I do to help myself and symptoms.

7 Replies

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  • Hello there.

    Sorry to hear you have UV. It's unpleasant!

    There are different types of UV and it is treated differently depending on what type you have.

    Do you know if you have a positive ANA or low complement?

    If neither of those then the doctors tend to treat less aggressively. You may find avoiding sun will help. I wear factor 50 sun screen regardless of the weather. I also found that sedating antihistamines were helpful (hydroxyzine, chlorphenamine).

    For the pain, I'd tak to your doctors. I found hydroxychloriquine to help my overall symptoms, but mine is associated with lupus.

    Hope you find something that helps.

  • Hello again. Thank you so much for all your advice I really appreciate it. I'm in so much pain today and feel exhausted! My uv was diagnosed through having skin biopsy but never came up in my bloods (only low immune). I'm thinking of booking to see a private dermatologist as I can't carry on like this! I'm 32 and feel like I'm 70, before this I was fit and healthy and i usually run 6 miles 4 times a week. To be fair I don't know much about this condition and need to gather lots of information about. Is lupus linked to uv? My mum has lupus but never had uv.

    Thank you again everyone for your advice

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  • Hi again

    UV can be associated with lupus or can be a stand alone illness. There are 3 different classifications. You can read about them on the Vasculitis UK Website.

    vasculitis.org.uk/about-vas...

    It's worth mentioning your family history to your consultants.

    I know how you feel - I was very fit before I fell ill and then 'bang' I was lucky to get out of bed! But I'm very lucky to be on the right medication now and back to keeping fit. Hopefully you'll get there too. It took me over 5 years to get back to feeling well through adjusting and introducing medications to get the right regime for me. X

  • Dear Laura,

    If I said 'poor you 'or 'you poor thing' you would think me patronising, no doubt. I will however say that I DO feel sorry, for you, and I mean this. I have had some similar symptoms but only when my phosphate levels went extremely high- whilst on dialysis. Sometimes a warm, but not too hot, bath can help as can things like Calamine lotion. Do speak to your doctors/consultants on this one-make sure that they know just how miserable you feel! It's probably not in your nature, indeed it's not in most of our natures, but you might-probably will actually-have to 'jump up and down' a bit. After all you are in pain and VERY uncomfortable, to say the least! Throw any other problems, that you are having-things like constipation, diarrhoea, bloating, and so on (I know, or strongly suspect, that you do have these at least sometimes) into the 'mix', as it were. Once again sorry that you are so miserable Laura. Please do let us know how you get on, will you please?

    Best wishes AndrewT

  • Hello again. Thank you so much for all your advice I really appreciate it. I'm in so much pain today and feel exhausted! My uv was diagnosed through having skin biopsy but never came up in my bloods (only low immune). I'm thinking of booking to see a private dermatologist as I can't carry on like this! I'm 32 and feel like I'm 70, before this I was fit and healthy and i usually run 6 miles 4 times a week. To be fair I don't know much about this condition and need to gather lots of information about. Is lupus linked to uv? My mum has lupus but never had uv.

    Thank you again everyone for your advice

    Reply Recommend (0)

  • Hi there I had UV two years ago I was sent to dermatologist for rash and put on antihistamines steroids and colchicine the rash went quite quick but ever since I have constant muscle and joint pain, this has never been sorted am left now on a number of different painkillers and sedatives but can no longer work or do physical activities I hope you fare better than I have xx

  • Hello again. Thank you so much for all your advice I really appreciate it. I'm in so much pain today and feel exhausted! My uv was diagnosed through having skin biopsy but never came up in my bloods (only low immune). I'm thinking of booking to see a private dermatologist as I can't carry on like this! I'm 32 and feel like I'm 70, before this I was fit and healthy and i usually run 6 miles 4 times a week. To be fair I don't know much about this condition and need to gather lots of information about. Is lupus linked to uv? My mum has lupus but never had uv.

    Thank you again everyone for your advice

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