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Thread: does it ever stop?

  1. #1
    Join Date
    Nov 2011
    Thanked 3 Times in 3 Posts

    Default does it ever stop?

    i see the rheumatologist about every three weeks for blood work
    my past few results have been pretty good, all the numbers have been in a normal range aside from the dsDNA, which is only 5 points above the average range. The doctor seems very happy and has been wheening me off the prednisone, except i still feel that soar straining feeling after walking up stairs or bending over, the simplest tasks usually hurt. If my numbers are so "good" why do i always feel like they aren't? I go into the doctor thinking "my bloodwork is going to be terrible" based on how i feel, but when the results come back its rarely anything to be concerned about. i was diagnosed about a a year ago so I'm still pretty clueless about how this works. Is that straining feeling always going to be there even if my numbers are all normal? Do you still feel it even if you get it to go into remission?

  2. #2
    Join Date
    Feb 2008
    Thanked 1,110 Times in 630 Posts


    Hi Sdelia,

    What I'll tell you is my own experience. I have no solid research or numbers to back up my opinions, it's just what I've had happen along the way. I've been living with SLE for more than 8 years now.

    What happens with me, is that sometimes my bloodwork looks pretty good, yet like you, I still feel like hell. Both my G.P. and my Neuro have told me that this is probably because the inflammation from a Lupus flare takes time to heal, just like any other soft-tissue injury. You can be back in the good range, but your body is still trying to repair the damage done, so even though your results look good, you will still hurt for a time afterwards.

    Soft tissue injuries caused by inflammation take time to heal, so you can still feel the effects even though your numbers are back in the good range. I won't say this is 100% correct, but I do believe that my GP and Neuro are probably right on this point.

    Hang in there, and get well,

    Last edited by rob; 03-17-2012 at 04:47 PM.

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  4. #3
    Join Date
    May 2007
    Seaside, Ca.
    Thanked 948 Times in 732 Posts


    Hi Sdelia,
    Many people are sero-negative, meaning that nothing ever shows up in their bloodwork. That can really be frustrating if the rheumy doesn't want to treat the symptoms.
    I've also found that the rheumy that I have now wants to dismiss the diagnosis that my former rheumy gave me because the blood tests are now normal. I don't get this. I think that they are just showing that the meds are working!
    Keep pushing the rheumy to find the right combination of meds that will make you feel as well as possible.

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