Please help, been unwell since June 2012 with joint pain, seen rheumatologist 4 times now and my ana bloods are equivocal for lupus?

my hair is falling out in clumps, severe joint pain and fatigue, red rash on neck/chest, am on hydroxychloroquine but affect my stomach/bowel, was on steroids but only for 1 month as my blood pressure is high.............. I honestly feel so fed up and so unwell how on earth do I get anyone to listen??????? Back at rheumy next month, why does it take sooooo long???? My Mum had rheumatoid arthritis but im r/f negative? tho i believe that im seronegative ra sufferer I know the symptons and know my body, im running out of energy and paitence, HELP xx

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  • I know its exhuasting but keep pushing rheumy. I was told my lupus tests were negative or borderline for a couple of years. Eventually I went private (thanks to my husband's work) and amazingly was diagnosed with Lupus, Sjogren's & Hughes Syndromes & Fibromyalgia, WITHIN 1 WEEK!!!! I was told that this is not unheard of to have negative tests some years prior to positive results. I'm not an expert but I would ask Gp to refer you to different Rhuematologist if you feel they are not listening to you. Good luck and hang in there, you will get sorted in the end x

  • Wow that is very interesting! Prior to 1st rheumy appt last July I looked into going private but hey ho it was the same consultant anyway! I don't understand why being nhs should make a difference? He has already confirmed I have Raynauds, with your advice in mind and my next appt 20 March if nothing comes to light i am going to tell him that I want a 2nd opinion, I cant go on much longer, co-codamol,tramadol,naproxeen whatever next?

    Thank you and very much appreciated x

  • Happysally is right I first started to get sick 11 years ago. I had several blood tests for lupus all were negative so was diagnosed with fibro after 5 years I was diagnosed with lupus only when I saw a new rheumy and had photos taken on hols which very clearly the malar rash my bloods at this time were very weekly positive. Last year my wbc was at an all time low and my rheumy added Imuran as a steroid spearing drug. I take plaquenil and imuran and I have good days and bad now more good that bad. So keep going and going until you get an answer. Good Luck with it.

  • thank you for your advise x

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