Hi lupees

after three decades of treatment for skin conditions including uv treatment which I refused after three treatments, I had a biopsy done, and been diagnosed with discoid lupus. I now have problems with my joints, sweats, extreme tiredeness, and a few other symptoms. not much luck with my doctor, I had to ask him to refer me to a rhuematologist, he told me i was fine, I had to ask for second opinion, Iam now seeing someone else, hopefully he can help me,

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  • Hi biskwut

    i was diagnosed with discoid lupus 18 months ago by dermatology after years of unexplained lesions on face scalp and ears!! im on hydroxychloroquine and various lotions and potions for scalp and ears, i too suffer extreme tiredness and joint pain, my dermatologist says discoid lupus is confined to skin only... so i am still confused lol i still havent been referred to rhuemy as apparantly we dont get symptoms of SLE,just had xrays took on hands and feet, so hoping something shows up to explain pain.

    hopefully u get on better with a different doctor and get some answers.

    take care xxx

  • I had discoid lupus in 1974 and neevr felt well after that,actually got diagnoised with SLE 4 years ago.Discod can turn into SLE so my dermy said he also said he thought i had sle in 1994.So now I know why all those years I always wanted to sleep and all the pain.

  • Hi ,

    I was diagnosed 12 years ago with DL. But as far as my doctors/consultant say - its only a skin thing!!!!

    I have tried to tell them about aches/pains/sweats/extreme tiredness, but they give you that look of disbelief.

    I now go to doctors to get my mepacrine and leave. They have proved useless, and in reality do not know much about lupus, so how can doctors tell you that you dont get aches/pains etc.

    My rant of the day!!!

  • yes GP don't seem to know much about lupus..My Gp said it doesn't affect tendons, but it does....My GP said if I have IBS its not from lupus, or id be in hospital with real bad lupus (I have mild lupus)...I try to write my rhumey in another town far from me for advice, then tell my GP what he advises...Then he listens...arggg

  • Hi I don't know if this will help or not but apparently the older the GP , the less they know about lupus it is apparently part of the new ones coming threw training , have a few friends who's children are training to be doctors ,there fathers or grandparent are or were GP , it's one of the more up to the minute thing they are looking at know ,so the younger they are the more knowledge the better for us ,and I must admit I saw a locus just out of training last year ,and he was genuinely interested and new a lot more than my GP

  • you might be on to something there, cause a doctor in training, did my yearly physical last October & he was pretty knowledgable on lupus

  • Hi i have to agree i saw my same docter for many years .and i had everything but to ibs to fobromygalia to nerve pain .i still go to pain clinic every three months .i saw a locum one day and she referred me to dermatology because of my butterfly rash ..when i asked dermatology why so long to diagonised his answer was the older docters dont know enough about lupus ..it explains alot ...

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