Hi all , I first became ill about 8 - 10 years ago with all the simptons of that pointed to Lupus , rash ,itching ,

pluracy,sunlight exposure ,ect ,the worst i think being fatiqued and aching bones during a flare but all blood test i have had ,so far are in normal range !!! I have been recently diagnosed with Sjogrens via a lip biopsy (as again bloods were in a normal range ) I have been told by dermy that I do have a type of lupus ,Cutainus Lupus and vasculitus , I also have Multi nodular Thyroid , I have just come back to work after being ill for 6 weeks felt and looked terible couldnt move, it hurt to much , chest infection and breathing on walking awfull loads of other things !!! I feel such a wimp t times ,I am on plaqunil wich have been taking for a year , I do think they help , my GP has started me back on Steriods again .

I still think I have SLE but blood tests are all normal , where do I go from here ??

3 Replies

oldestnewest
  • I'm afraid you are one of many. I have no appropriate antibodies but eventually all rheumies united in that I do obviously have an autoimmune condition (s) and "we might as well call it lupus for simplicity." As one lovely rheumy (at Guys) said, "we treat them the same, anyway." However, I would feel more "legitimate" if I could "prove" it with the appropriate antibodies.

    It does sound as though you are being taken seriously and treated appropriately. Do you see a consultant rheumy? Recommend St Thomas' Lupus Unit if you can get there.

  • hi,pretty much all autoimmune diseases are treated the same way ,and sometimes your bloods will never match ,but you evidently have lupus like symptoms,from a self help point of veiw you can take a good holistic approach to managing your symptoms ,the meds your on treat lupus ,R.A ,and many more ,if you can tolerate them and there helping keep up with the meds ,combine the two treatments together and if it makes life easier tell others you have lupus or connective tissue disease,give them a label to understand ,we dont always match clinical markers !hope you keep well ,brave;)

  • Many thanks for your replys it helps to know others are like u , and its not in my mind XXXX

You may also like...