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Thread: What is your flare protocol?

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  1. #1
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    Question What is your flare protocol?

    I'm looking for advice and information...last night I had my first full-on flare since I was diagnosed and have been getting treatment. (I lost my hearing in one ear to autoimmune stuff back in April, but I didn't feel bad then, other than the loss of hearing).

    I don't know what triggered it - could have been one or a combination of a few things...I guess it doesn't really matter, other than trying to avoid them again, which I will (I had a nasty fall on the back steps - dang frost! Aaaand I accidentally ate stuff with milk in it, and the weather changes, and I had a late night, etc...).

    ANYHOO - it started with a headache yesterday about mid-day, and by 8pm I was a mess...I just CRASHED. Full-on flu (without the fever) - you know the feeling - epic fatigue, achy all over, brain fog like crazy, can't regulate body temp, swollen finger joints/clumsy as all get-out, etc. I was flat-out on the couch, and thinking I'd have to go to the E.R. if it got any worse, just because I was wondering what on earth would make be feel so horrible when I'd felt excellent 9 hours before. (Duh....LUPUS/SJS!)

    I ended up taking my Methotrexate one day early, and that DID help....hard to believe taking poison could make you feel BETTER, but it really did help. And then I slept 11 hours, and today was...eh. A BIT better, but not a lot. I ended up taking Ibuprofen twice during the day, which I know is not good with the Mtx, but I had to take SOMEthing!!!!

    So WHAT DO YOU DO when you have a flare?

    I know I should have called my doc and gone in, but I had to work and my MIL flew into town this afternoon so I had to go get her at the airport, etc. I have had little "mini-flares" where I felt cruddy for a few days here and there, but nothing like this. I really CRASHED last night. Sucks to be reminded of how bad this stuff can be.

    I will call the doc and go in, but I also kind wanted to know how you guys cope with flares....do you have medication that you take immediately to deal with it? Do you always go in to the doc?

    Any advice is greatly appreciated....thanks.
    Last edited by SleepyInSeattle; 11-12-2012 at 09:37 PM.

  2. #2
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    talk to your doctor about an emergency plan.

    i have a set amount of steroids i can take without calling him.
    it is for times when i flare. (my plan includes dosages and wheaning down proccess)

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  4. #3
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    Same with me, as what Steve does. I call the docs' offices, and which one(s) is dependant upon what the flare involves.
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    I'm like Steve, upping my prednisone for a couple of days usually helps.

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  8. #5
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    So reading this thread and the replies I'm seeing so far, I definitely should consider calling my doctor more often. I tend to suffer through symptoms of severe flare, "lupus flu", extreme joint pain and swelling to the point that I can't drive and can barely walk up stairs, fever, extreme malaise and fatigue for weeks and weeks and weeks before I call my rheumy with the "enough is enough"! So far I've had 3 flares lasting 1-3 months each this year and I've called him once for a 6 day prednisone pack.

    I guess my hesitation stems from not wanting to seem like a complainer, like I can't "tough it out" and based on knowing that there are countless other Lupus sufferers out there who have it worse than me!

    It's tough. I think I may make an appointment again in the next few weeks so he can follow up on some of my symptoms from the last few months and decide what to do. There's of course a part of me that really just wants to avoid the daily prednisone regamine that I'm sure he's going to recommend as long as possible. But I have to balance that wishful thinking with the need to be able to continue to function every day and not get so sick that I can't work or take care of my daughter. : /

    Long story short, don't follow my example SleepyInSeattle, call your doctor right away and see what he can do to help. Hope you feel better soon.
    "Fortuna Favet Fortibus" ...Fortune Favors the Brave.
    ~ Diagnosed SLE Lupus, Endometriosis, Anxiety Disorder, IBS~
    Meds: 400mg Plaquenil, Prednisone 6-day pack (for flares), 800mg Ibuprofen 3x day, Xanex (rarely), Vicodin (rarely)
    Supplements: Omega 3/6/9 complex, 2000iu Vit D, Iron/B12, Calcium, Folate complex, Cranberry, Probiotic, MSM/Glucosamine.

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    Quote Originally Posted by deannegirl View Post
    So reading this thread and the replies I'm seeing so far, I definitely should consider calling my doctor more often........
    having the steroids available, does not mean that you have to take them.... it offers an option.
    i have gone 2 years without taking them. but they were there just the same... just in case.

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