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Gosh, overwhelmed by reading down the page how many topics and questions are relevant to how I feel!!! I am NOT alone :)

Gosh so glad to have found you all, I was diagnosed with SLE a year ago. I am 45 but by what I have now learnt have been suffering for many years! My butterfly rash started when I was 15 and a dermatologist told me it was acne and said "buy make-up" 30 years before I found out it was a side effect of Lupus.

8 Replies

  • Hi porcelain jane, it is a great site for us lupies. As you will already know, it's not just the usual joint/malaise problems that we moan about, it's all the other stuff that we tend to share on here. Such a complex disease, and never a day goes by without something bothering us. I was the same as you when I first joined. Couldn't believe how many problems we all share. I don't know any other lupies, so for me this is a great forum to belong to.

  • Hi 6161, thanks for your reply, I couldn't agree more about the 'extras' we have besides the joint/malaise! Suffering with the rash, moved to the scalp now and blepharitis really badly atm as well as a very speedy digestive system. Rang my rheumy helpline this week and they had me in for a steroid jab today so fingers crossed :) Great to be on here and like yourself, I don't personally know anyone else with our intriguing condition!

  • hi that's exactly what my gp said to me when I had "bruising"/discolouration around my shocked by that as not like him.had my butterfly rash for couple of years -given lotion but rheumy dismissed still fighting to get a diagnosis.i feel physically sick now after walking dogs-cant walk far and bed when I get home.tho I feel this is now attributed to somethign else

  • Hi Anbuma, yes I have been prescribed various lotions, creams, antibiotics and dietary advise over the years by GP and Dermatologists but to no avail, was even on Tetralysal for nearly 2 years which is apparently unadvised if you have Lupus! :/ hope you get something sorted with someone very soon.

  • my gp wont even refer me to a dermatologist (on advice of A&E dr)for rashes.seems like they palm you off with meds and hope you ll go away.

  • Hi Porcelain-Jane,

    Welcome to HealthUnlocked and the Lupus community!

    We offer an information pack for people who are newly diagnosed or would like to find out more bout the condition, if you would like to receive one of these packs then just send me a quick private message or email with your address and i will pop one in the post for you.

    I hope that you find the forum useful and if there is anything you need please do not hesitate to get in touch with us here at the National Office on 01708 731251.

    Best wishes,



  • hi I'm new to here too ,not got a diagnosis yet had mri scans and have ultra sound scan on 15 may ,can't get round with out mobility scooter .had the rash for years dr told me it was exam a.just getting over blisters in my ears and currently got them on my tounge .everyone keeps asking when will you get diagnosed ,like I have a christal ball .glad to of found this site xxxx

  • Welcome, both: I definitely recommend the welcome pack; it's a great way to start coming to terms with this wretched disease!

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