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Thread: Went to the rheumy yesterday...

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    Default Went to the rheumy yesterday...

    I've had a bit of improvement with the Plaquenil though it's only been 4 months... and really, at that, I only had maybe 2 good weeks in Feb. and now we're back to the usual feeling like crap.

    He said he'd call me ANA-negative Lupus from the info we have now... (though it's rare, he says).. but really, what about my history from birth has been "normal"???
    Shannon
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    hi shannon,

    sounds like you have lucked up on a rheumy who does not put all of the importance on "lab tests". hooray for you.

    so, staying on plaquenil - that is good....did you all decide to try something along with the plaquenil that might get you out of the flare?
    Phyllis

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    I agree. At least he is willing to call it ANA negative Lupus and not dismiss the possibility entirely, therefore continuing to treat your symptoms. I also would like to know if he has mentioned something, other than the Plaquenil, to help settle your current flare?

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    Yea, I was a bit torn afterwards, trying to digest the whole thing. All day yesterday I was really down, feeling like he'd pulled the rug out from under me because the ANA-neg lupus was simply what he would call it if he HAD to call it anything at the moment... he's still keeping other things (MCTD / UCTD, etc) on the back burner, he's afraid that if they slap on the Dx of lupus up front that other docs will automatically attribute any new symptoms to that. I had that emotional knee-jerk reaction, automatically thinking I was going back into defense mode - trying to convince them it's not in my head. Now, after a long discussion with the hubby, I realized my reaction was a bit irrational... and he helped to put things in perspective for me. Also, I assured him that my PCP isn't the type to lump all of my issues in with the AI excuse, he's super thorough.

    I can appreciate his honesty and I like the fact that he's keeping other explanations in the mix as possible Dx's as well. My symptoms are primarily the fatigue and muscle / joint / skin manifestations...

    The Plaq seems to be helping somewhat already, though he's skeptical... mouth sores have decreased in frequency, "eczema-like" rashes haven't flared up since Nov. until just last week (and still not as bad as they used to)... he wants to stay on the Plaq only for now, though there's another med he mentioned that he says tends to help more for those with mainly fatigue / skin / joint / muscle issues (started with a Q I think) but he wants to give the Plaq a few more months to reach it's full potential.

    Unfortunately, he didn't want to do a round of steroids right now because he thinks thats a slippery slope (and I know he's right).. said if I don't make some improvement in the next week or so we'll consider it. So, at the moment it's a hurry up and wait situation... a bit frustrating, but he hasn't blown me off, still was very adamant about the fact that he still thinks it's definitely something AI associated and he intends to figure it out.
    Shannon
    Divorced
    Registered Nurse
    Proud Momma to an 8 month old kitten. She was on death's door when I found her and now she growing up into a beautiful cat, she's my baby.


    Life isn't about waiting for the storm to pass... it's about learning how to dance in the rain.

    God, grant me the serenity to accept the things I cannot change...
    The courage to change the things I can...
    And the wisdom to know the difference.

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    Shannon,
    Your doc sounds great to me. At least he's not one of those who wants to wait for something to "get bad enough to treat". It's tough, but hang in there. I noticed that the plaq works great on the skin problems, too. That shows that it is helping you, so keep going forward.
    Hugs,
    Marla

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