Newly diagnosed

My name is Jean, and I've been suffering with various immune system disease for many years, Sjogrens, connective tissue and query rheumatoid arthritis. I was told back in 2007 that I was borderline for lupus but it was never really diagnosed. This last few years I've had problems with mouth ulcers, then I suffered a hole in my nasal septum, that is now very large. It was only since developing this awful rash that things started to happen. When I saw my rheumatologist last month she immediately said it needed looking at by a dermatologist. I finally saw one last week, and as soon as she saw me, she said it was lupus, and did a biopsy as well. ive to go back for the results in a couple of weeks. I was prescribed some creams to use in the meantime.

I was quite upset to be told about the diagnosis, but in a way relieved to know what was going on. When I put all my conditions together, it's obvious that lupus has been the main problem all along.

2 Replies

  • Hi Jean52,

    Welcome to the LUPUS UK community here on HealthUnlocked.

    It is understandable that you were upset when you heard that you may have lupus as well as feeling relieved. Let's hope you are now on the right track to receiving the correct treatment.

    We offer a free information pack which is available to download via our website, or you can request one to be sent to you by post by clicking on this link -

    I hope you find this forum helpful and please do feel free to contact either myself or Paul should you need anything, we are happy to help.

    Best wishes,



  • Don't be too upset jean52. I'm sorry that his has happened to you. You might want to reflect on who, and how you were given a definitive diagnosis based upon seeing this dermatologist for the first time, and who then tested you but will not get the results for 1to 2 weeks. I don't doubt you and your suffering and it does sound like lupus, but still I think you deserve a diagnosis that comes from a doctor or specialized clinical PA who has seen you more than one time. We all deserve a strong diagnosis from a confident doctor who has connected all the damn dots. I just know how skeptical people can be especially when you may be Between flares. It really hurts when people doubt you. Good luck sweetheart and God bless you on your journeys.

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