Urticarial Vasculitis

Hi there I am new to this site but follows an appointment with the dermatologist this morning, diagnosed with fibromyalgia in July and today the dermatologist thinks I have

Urticarial Vasculitis !! Can anyone shed any light on this!! I was so happy he didn't think it was Lupus I didnt ask questions and now I think I should have !! Thank you

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  • Hi Macberts,

    Here is the link to the page on Urticarial Vasculitis on the VUK website

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

    Did the dermatologist take a biopsy of your rash to confirm the diagnosis?

    The most important thing is to see a Consultant who has experience of diagnosing and treating Vasculitis as its a rare disease. I would have a look at our website and compile a list of questions to ask at your next appt! You are welcome to phone or e mail the VUK helpline at any time.

  • Hi there thank you no he never took a biopsy, just an open appointment to contact the dermatology dept direct should I experience this nasty rash again. He just mentioned that this is what it could be after looking at pictures of it when it was really bad, looking at it now and my health history. I have been reading since I got home About sinus problems etc now I have been getting nosebleeds recently and terrible sinus problems which I have had a long time. I have my doctor tomorrow so will get a chance to chat then. Thank you for your reply I will have a good read X

  • It sure others will answer from experience but this page from the website might help explain Hope it helps vasculitis.org.uk/about-vas...

  • Thank you I will get reading xx

  • Dear Macbetts

    Be relieved that you are getting probably a more informed medical opinion than I had

    After the birth of my first daughter in 1973 6 myths later I came out in a head to toe raised rash ( referred to as nettle rash) it looked as if I had been whipped the raised wheals were painful and often it itched and I felt sick and awful

    I went to see a dermatologist who then didn't have a clue about Vasculitis ,advised me not to take aspirin and could not find any allergen that caused an allergy

    So that was than

    For years I had 'allergy attacks ' that were treated with antihistamines with little success I just had to often take to bed for a week or so th let them improve

    I found stress did not help

    Once I got prescribed Prednisolone and it worked on the Urticarial like a magic drug

    Then in my forties I developed fibromyalgia which took about 18 myths to resolve

    I also developed diabetes ( LADA not type 2 although that has been misdiagnosed as well ) and in my 60s have survived bowel cancer and chemo but now have been diagnosed with Giant cell Arteritis

    So my advice is inform yourself as much as possible because I would not want you to go through your life struggling to understand why you have this Urticarial episodes and have them written off as allergy With no known cause

    How I wish I'd been properly diagnosed and treated all those years ago ..it might have prevented the circulatory damage to my system that could have been prevented

    Good luck

    June

  • Hi Jane thank you and yes your right I guess I am lucky what you have been through is just awful! Sending you lots of love x

  • Spoke with a doctor (not usual one) and explained what dermatologist had said she said that my blood results were all good in the summer so no need to worry !!

    Has anyone else had bloods ok only to be tested months later or is there really no way it's this ??

  • What bloods did they test? Is this Dr knowledgable about Vasculitis?

    Bloods can be normal in Vasculitis, there is no specific test for Urticarial Vasculitis apart from specialised blood tests such as anti c1q etc for the more rare variants.

    Have you been given an open appt for a biopsy if the rash comes back?

  • Hi there I have no idea what blood tests were done but I will be taking all this info with me! I also have aches and weekness in my arms and ankles/feet but put it down to my fibromyalgia and for about two weeks I feel like my chest is being squeezed, in the morning I have a stupid cough that eventually leaves but I still have the feeling in my chest , I have rhinitis and nasal crusting (had that for a long while) but recently I have had two nosebleeds one when I was about to fall asleep and also one bloodshot eye. Yes I have an open appointment with the dermatologist and I have to ring up as soon as it comes back!! I am a little concerned but don't know if these symtoms ring any bells with anyone !!

  • Aloha,

    I had urticarial vasculitis a few years back that was absolutely horrific. I was under a lot of stress and had welts on 85% of my body for weeks along with Angiodema of my face. My dermatologist thought I had Lupus or Hypocomplementric Urticarial Vasculitis and Angiodema. She put me on Plaquenil and Prednisone. It helped me tremendously! It has been over two years and I have been up and down with flares ever sense. I still take Plaquenil daily. She still stands behind the Lupus diagnosis but my rhumy never gives me anything definitive. I wish you only the best on your quest for answers. Also recommend doing some genetic testing to see if you have a gene mutation of MHTFR which is a hereditary condition that predisposes people to this.

  • Thank you so much looks like you have had a horrific time !! I will let you know how I get on xx thanks again

  • I have Urticarial Vasculitis ( 25 years ) and a definite diagnosis was made by biopsy

    ( which I've, had done twice , twenty years apart ) My advice would be ,if it isn,t suggested , I would ask if you could have an SOS appointment so that as soon as you get the rash you can call the dermatology dept and have a biopsy arranged before the rash disappears.

  • Hi there yes I have been given an open app with the dermotolgist dept and as soon as the rash comes back I have to phone for an app !! Hoping It was a one off but have other symptoms and new symptoms so will see what happens ! Thank you for your advice it's very much appreciated x

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