Terrible day !!!!!!

Hi had a test for Lupus came back clear but i have nearly all the symptoms just coming down off steroids feeling terrible but they want me off them

been treated for Polymyalgia for 2 years then they have decided well maybe not !!!!!!!!!!!!

My blood tests come back high inflamation markers at the moment around 20 but have been 45

I just wish I could get some answers there must be a reason why my skin hurts even to touch & the red (net rash) & being sooooooo tired :(

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  • Hi,

    I have MCTD... They won't commit to Lupus yet... What bloods have you had done? My CRP has come down to 5.6, but I still have terrible joint pain. I too have a red rash on my face and at times finger joints. I'm shattered all the time.

  • Hi

    I was tested for CTD came back clear !!!!!!

    2 weeks of steroids then they are going back to the drawing board :0(

    Like yourself i am so tired could just collaspe any where

    I dont get a full nights sleep have to get out of bed every 11/2 to 2 hours to limp about now I am down on steroids in pain all day

    my rash is on my arms & legs & across my nose but when i get really tired they get brighter red :(

    thank you for answering hope you have a good day xxx

  • Hi, I have SLE Lupus, a very bad case of it. on the mend now but know alot about it. you need to get a anti DNA blood test, its quite an expensive one to do, but they should do it, if it comes more then about 20 then there is a problem, depending on the number, my worse was when i was at over 100 ! i lost my long hair, i also had severe brain damage and alsorts wrong with me.

    if needed to, contact NHS direct and then you will be in hsopital if its that bad, and then a rheumatologist will then specifically see to you hopefully, and diagnose you. many doctors and nurses havent even got a clue on what lupus is!

    Hope this helps.

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