Just joined up and hoping for some advice . I've been struggling on and off with lots of varied ailments , complaints and illnesses for yonks and about 10 weeks back developed a peculiar lumpy rash around my nose . I went to a dermatologist who did a punch biopsy and the result has come back as lupus . She is sending me for blood tests to see if there is systemic involvement .
I'm feeling a little confused and concerned , half relieved to know what might be going on and half unsure of what to expect . Any advice would be welcome ,
Thank you .
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Cas23
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Well it's good the dermatologist has identified something that needs further investigation, and might explain some if not all of your troubles. Lupus in any form can be tricky to manage but everyone is different, so firstly don't get too overwhelmed by what you might read! I'm sure you'll be referred to a rheumatologist, so asking if they have a special interest in lupus or if you can be referred to a centre of excellence might help if the diagnosis is confirmed. Try and get copies of all your results, it can be useful down the line if you have new problems arise, don't respond to treatment, are unhappy with your care provider or they change.
Good luck with all the tests, I hope they bring clarity. Keep us informed if your progress.
Thank you , ... I am grateful , having read so many posts about trouble people face , that I have a diagnosis of sorts in such a relatively short time . I have also read many positive posts . I've a feeling this site may prove invaluable.
I used my works health insurance to see the dermatologist as I felt my gp wasn't taking me seriously and was insistent it was Rosacea.
I have asthma and ibs , I'm now wondering if these problems may be connected also .. Kind of fed up of listening to myself whining so thank you for your kind words and support . I'll keep you posted .
You are not whining - I was diagnosed with Sjogrens within minutes of seeing a private doctor who advised me to go NHS as I didn't have insurance. I spent a lonely, frustrating year getting a diagnosis of Discoid Lupus plus Sjogrens. A lot of Doctors are quite ill informed so IT ISNT YOU, my loneliness receded thru this very very good website. Do make sure as Ruby says that you get Consultants who have a special interest. It may take a few appointments but good luck and don't hesitate to ASK and take all letters with you each time. Best wishes
The description of your symptom can be associated with a ‘malar rash’. Up to 60% of people with systematic lupus erythematosus will develop a butterfly, or malar rash; the rash mainly occurs on the cheeks and the bridge of the nose and is a pink or reddish-colour.
We offer a free information pack that contains helpful guides, factsheets and other informative literature on the symptoms and diagnosis of lupus as well as a list of helplines. You can download or request the pack here: lupusuk.org.uk/request-info... .
If you want someone to speak to, we have local LUPUS UK contacts that cannot give medical advice but are there as a listening ear to offer support and advice over the telephone. These contacts mostly have lupus themselves and are volunteers. If you would like more information on having a local contact to speak to, as well as information on support group meetings you can email me at chanpreet@lupusuk.org.uk
Wishing you all the best, let us know how you get on.
Thank you , I've just filed the request form ... I'm no further along this diagnosis lark really , had blood taken yesterday and am of to see my gastroenterologist tomorrow ... On the bright side I have a new game , its called ' which bit hurts today ? ' and if I get bored of that one I play ' hunt the new lumpy bit ' ... Hours of fun 😀
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