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

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

6 Replies

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  • Do you have any history of migraines or miscarriages and was the rash livedo reticularis? Some of us on here have hughes syndrome, and persistently test negative, which I do... although I had three pregnancies managed on fragmin due to mutliple clots during my first pregnancy and one small one afterwards! Mary F x

  • Yes I do suffer from frequent headaches had about 4 miscarrages and terrible periods , amiricle i have had 2 children , my skin (legs) have always from a teen been grey motterly looking XXXX

  • Hi hon

    I'm sorry to hear you're having such a tough time! I have similar with blood tests not conforming to clinical symptoms, I have Hughes with lupus symptoms overlap, fortunately my gp is very helpful and wants to learn more! Just been put on steroids again too. Attempting to calm down skin and rubbish chest.

    Where are you hon? Maybe we can suggest, rheumy or haem!

    Hope you feeling ok today!

    Take care gentle hugs love Sheena xxxxx :-) :-) :-)

  • Hi I live in Cardiff Thanks for your reply XXXX

  • What are the tests that are needed to diagnose Hughes syndrome ?? XXX

  • As Kate wrote on a recent post:

    There are three blood tests which look for antiphospholipid antibodies in your blood: the lupus anticoagulant (not to be confused with lupus itself); the anticardiolipin (aCL) and the anti-beta2-glycoprotein1.

    Many laboratories also record the particular class of the antibody when carrying out the anticardiolipin test (IgG or IgM) which is doing the binding, IgG being more likely (though not uniquely) to cause thrombosis.

    A diagnosis of Hughes syndrome is made from a combination of symptoms and a positive blood test.

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