Uticeral vasculitis: Hello there please can... - Vasculitis UK

Vasculitis UK

7,759 members6,736 posts

Uticeral vasculitis

laurabaker82 profile image
7 Replies

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.

Written by
laurabaker82 profile image
laurabaker82
To view profiles and participate in discussions please or .
Read more about...
7 Replies
Lupylass profile image
Lupylass

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.

laurabaker82 profile image
laurabaker82 in reply to Lupylass

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)

Lupylass profile image
Lupylass in reply to laurabaker82

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

AndrewT profile image
AndrewT

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

laurabaker82 profile image
laurabaker82 in reply to 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)

6russell profile image
6russell

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

laurabaker82 profile image
laurabaker82

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

You may also like...

Vasculitis

Hi if this helps the people looking to see if they have vasculitis this is it hope this helps I...

Cutaneous Vasculitis

the most awful rash and raised itchy lumps over the lower part of my legs. I went to my GP who...

Fatigue and Vasculitis

have to go short of sleep, the reserve battery cuts in. But people with vasculitis don't have the...

Vasculitis and flucuations

people.; that symptomless vasculitis can progress to symptoms later. and some symptoms get better,...

Vasculitis and alcohol?

medication, but I just didn't think it affects the body so extrem. A few months ago I had one beer...