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Discussion Starter · #1 ·
Hi,

I came across this forum after spending time searching for information about urticarial vasculitis. It was such a relief to find somewhere to talk to other sufferers of this rare condition!

I was diagnosed 9 years ago and have been investigated several times for SLE but as yet no positive diagnosis for that even though I have so many of the symptoms.

I'm looking forward to getting to meet you all.

Eva
 

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Hi Eva and welcome to the forum.

I can understand your frustration in getting a diagnosis. I was one of the lucky ones and was quickly diagnosed. However, there are many members here that have wait years, like yourself, for a diagnosis.

Hang in there and hang out here with many in your position. It is a great forum with lots of friendly, supportive people.

Nutty
 

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Hi Eva and

:welcome:

Just wanted to say Hi and I hope you are doing ok!

I'm in the middle of so many tests but still no diagnosis other than Fibromyalgia with other things happening!!!!!!! ( so the Doc says)

Rheumy on my first visit suggested to my GP urticarial vasculitis or possible SLE but months down the line and no tests are showing although I have signs and symptoms.

It will be great speaking to you as I know very little about urticarial vasculitis. People on this forum are very nice and helpful and have so much knowledge.

Take Care Mrs M:)
 

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Discussion Starter · #4 ·
Thank you!

Hi and thanks for the warm welcome! :)

On the subject of diagnosis - Mrs M have you been referred to a dermatologist regarding the possible UV? I was and had a biopsy using tissue from a welt. It was the first case of UV that she'd ever seen and she had to go away look it up! :) That was what led onto trips to various consultants, including the wonderful unit at St Thomas's and also a very good rheumy at Southampton University Hospital where they also have a very good Lupus unit too. I'm lucky that both the GP I had when I was first diagnosed and the one that I have now are both very clued up and very supportive.

I think it is human nature for all of us to want a label for whatever it is we are suffering from be that Lupus, UV or anything else. The frustrating part is definitely being in limbo without that important diagnosis! :)
 

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Hi Eva,

I am new to Lupus but wanted to stop and welcome you to the board.

Hope to get to know you better.

Sorry you having issues with the skin...........how frustrating.:mad:
 

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Hi Eva

I've been referred to dermatologist last Friday after my Rheumy visit but I guess it will take time for an appointment. I am going to chase this up as I was supposed to have been referred to a vascular clinic and that never happened!!!

If you don't mind me asking but how did your uv come about and how long to a diagnosis? Please say if I'm bombarding you as I'm sure you're trying to get familiar with the forum and don't need me bugging!!

Hope todays a good day for you.:)

Mrs M x
 

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Hello Eva

I'm new to the boards, but not to SLE unfortunately!

There's lots of support on here & practical help. I've found it amazing already!

You take care
Lxx
 

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Discussion Starter · #9 ·
Mrs M;517113 said:
Hi Eva

I've been referred to dermatologist last Friday after my Rheumy visit but I guess it will take time for an appointment. I am going to chase this up as I was supposed to have been referred to a vascular clinic and that never happened!!!

If you don't mind me asking but how did your uv come about and how long to a diagnosis? Please say if I'm bombarding you as I'm sure you're trying to get familiar with the forum and don't need me bugging!!

Hope todays a good day for you.:)

Mrs M x
Hi Mrs M,

I don't mind you asking at all! :)

I first presented over the course of about 8-10 months with small outbreaks of angioedema on my face, nothing very big and as I have always been prone to allergies I assumed that was what it was and bought some over the counter anti-histamines. Then I started to develop large patches of urticaria and during the course of about 3 months or so this started to escalate from just one or two patches to often having them across more than a third of my body. I started to get stronger anti-histamines from my GP and on the day that I went into see him with my face so swollen and bruised that he didn't recognise me, he decided that I needed a referral to a Dermatologist. He actually rang the department there and then and got them to see me the following week. By this time I'd also had to go to A&E twice for emergency treatment because my throat was swelling shut and I looked like I'd been burned and then beaten because of the urticaria and the bruising it left behind. The Dermatologist took a tissue biopsy on my second visit after having done a huge number of tests for allergies which didn't really show much other than something I'd known for ages - hay fever and an allergy to red meat.

She rang me the next day and told me the results and recommended to my GP that I be referred to St Thomas's as someone who might have Lupus as well as UV. From the start of the onset to diagnosis was I think about 10 months in total but it took 2 more years to get the drug regime correct so that I don't have major outbreaks unless I am very tired or stressed. I still get smaller ones but compared with how I was to begin with this is a very big improvement. Of course now I've had the condition for a few years I have started to experience the ongoing development of it, which has of course led to other problems, but that's pretty much how it all started and how I got my diagnosis. One thing I have learned is that it pays to be well educated regarding UV because most doctors never come into contact with it and on the odd occasion that I've been admitted to hospital for emergency treatment it's been an uphill battle getting them to understand what the cocktail of drugs are for.

Sorry - that turned into a bit of a novel, but I hope it helps! :lol:
 
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