Hi Everyone, I'm a new member and want to say hello...

[curlyflowergirl]

Hi everyone, I'm newly diagnosed with CCLE of the mouth, nose and vulva and I'm currently undergoing tests for systemic Lupus. I have heard of Lupus, but like most people, I don't really know anything about it. I have joined Lupus UK in the hope of finding out more about the disease and finding support from others in the same boat :0)

[larissa]

Hello !

i am in the same boat ! not officially diagnosed yet but am being treated for Lupus.

Hope you get answers soon , it feels a bit like being in limbo ! x

[curlyflowergirl in reply to larissa]

It's awful isn't it?! I've been unwell for at least ten years and it has taken all that time to actually get a diagnosis. It was the Leeds Dental Institute who took a biopsy of my mouth who actually found out what is wrong with me. I felt like people thought I was always ill and a hypochondriac. Lupus affects so many things and until all the threads are pulled together.... Hopefully you will soon have a diagnosis and you'll know where you stand. I feel much better for knowing and now I can get my head around it :0)

[Thaddeus]

Hello Curly and Larissa

Be very careful when researching Lupus. You may find some horror stories and get a sense that it is all gloom and doom, when in fact it is not.

Again by its nature a forum like this will tend to feature peoples problems rather then the good or normal day to day stuff.

Lupus is a very personal illness, in as much as we all have out own personal version of it.

For a more realistic idea you migtht find one of the facebook groups useful.

Having said tha this forum is great resource.

[brave]

Welcome curlyflower girl,lupus is a crazy disease and no two people are the same ,plus ,,,,it can overlap with other autoimmune disorders ,i wouldnt assume you have it unless your told so ,there can be many mixed connective tissue disorders with similar symptoms,if its lupus then i went to the libary and got as much info as i could ,i try to manage it as best i can ,but am still getting to know the disease so battle constantly,i would recomend doing your research and never be afraid to ask consultant questions ,take care ,brave

[curlyflowergirl in reply to brave]

Hi Brave, I had a biopsy 8 weeks ago and was diagnosed last week. Having said that I also have Hypothyroidism, Diabetes and Premature menopause all of which could be considered autoimmune?.....

[alyj]

Hello & welcome to the crazy world of Lupus!! I was diagnosed in 2007, & still don't fully understand it.

Won't go through what I'm dealing with at the moment. But remember to post every step u take/have to deal with on here & you'll always have supporters.

Good luck, love Aly xxx

[jemmyjemjem]

Hi

I have just been diagnosed and am on treatment, I have been unwell for about 5 years and the last year have had horrific mouth ulcers, up to 30 at a time, they spread into my nose, I eventually walked into my doctors surgery and demanded to see a rhumatologist who specializes in lupus, who saw me, took a look at my list, did some test and said yup, I agree I think you have Lupus, with a slice of Betchets, Raynaulds and Rosacea caused by long term steroid treatment just to kick you and make you ugly when your down ! lol ..... the minute IO got diagnosed I felt great, at last a reason for being so tired and so bleurgh, cause that is the only way to describe it, bleurgh. when I told my parents they were so doom and gloom about it and immediately my mum read everything she could on the disease, I am relatively mild, but my symptoms have clearly got worse over the years. I am tryin to be so upbeat about it, I am only 15mg of steroids/day and 100mg of azathioprin/day plus a antibiotic for the rosacea, the aim is to reduce the steroids usage to 5mg over 6 months and bring the azathioprin dose up to about 150mg, but I am trying to lose weight first as I don't really want to be on that much as I will have no fall back. I immediately left my rhumie's office and enrolled onto slimming world, I have lost 7lbs in 2 weeks, despite the steroids usgae, only another 14lbs to go. As you can tell, the future is bright, the future is Lupus ! .... i say that tongue in cheek as Ihave actually had to very hectic and stressful days and feel like i have been hit by a bus, so am off to bed ! Good luck with everything

J x