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Thread: Slowly Getting somewhere

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    Default Slowly Getting somewhere

    After 6 months of needing to sleep for on avg 11-12 hours a day I'm slowly getting somewhere. Although it often feels like it's one step forward and two steps back.

    I saw my GP who wants to rule out the easy to treat issues first. So she's testing my Thyroid hormone levels. I'm already on thyroxine so I guess that makes sense. I also got in touch with a lupus nurse who explained that the standard for monitoring if a flare up is occuring isn't ESR anymore but ANA. The titrates will be higher during periods of activity. Mine was last tested in June 2010 when they discovered the anti DS-DNA and diagnosed the lupus and they only did it then because I changed from a private consultant to the an NHS one. The time before that was 2 years again when they diagnosed me with MCTD, Sjogrens and Raynauds.

    Does anyone else have their ANA monitored regularly? Or is it just my Drs that don't?

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    ANA's are not specific to Lupus, but most people with active Lupus do have elevated ANA. You and your doctor should be aware of the fact that your Lupus could be very active and your ANA levels could be normal. I can understand the desire to monitor ANA levels to determine Lupus activity, and it is probably a pretty good practice. However, if you are displaying signs and symptoms of a flare up and your ANA is normal, please do not let them stop there and try to tell you that your symptoms are not due to Lupus. If the ANA is normal with symptomology, there are other tests that should be run (and one is the ESR).
    I wish you the very best

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    Saysusie
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    Cheers SaySusie. The problem I have at the moment is one of the GPs at our surgery says no raised ESR then no flare up. Then 2 weeks ago I was in A&E barely able to stay awake with a BP of 76/49 with swollen eyelids and swollen toes and the A&E Registrar told me I didn't have swelling as I had no raised ESR. My husband said to him. I can see it in her face and he dismissed it saying it wasn't swelling as no raised ESR or CRP. I know things aren't normal. I'm so tired and having so many symptoms I just want to get to the bottom of it

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    Suzy - My doc monitors it all, ESR, ANA, ds-DNA, CRP, etc....all blood work is done on avg 3-4 mos. My ANA is always out of whack and the ds-DNA is always "high". The others are sometimes and it doesn't matter if I'm flaring or not. My suggestion - get a new doctor, but thats just my opinion. Best of luck!
    Lauren

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