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    avatar
    raquelharris posted:
    hv been diagnosed with lupus and fybormialgia(spelling is bad)and on top of this i have multiple other health issues and jst wanted to know what to do because i still am not on any meds for the lupus--jst was given neurotin for the pain that i hv tld the dr that it does not work and was jst given a higher dose---their is only one dr that deals with this problem in my town so i hv no transportation to get to the city where their r more resources---what cld i ask the dr to put me on because i am unsure of this disorder
    Reply
     
    avatar
    queenoflupus responded:
    To get me under control the doc started me on a large dose of predisone (steroid), I still after 10 years take 5mg every other day to keep the lupus away from my kidneys, it seems to like them. I am also on Plaquinil that is used to treat Lupus and Nabumetone ( it is an anti-inflammatory and for arthritis). As time has gone on my meds have increased because the Lupus has caused this to happen or one of my meds has caused me to develop something new. Hopefully you can find someone to get you to a hospital with more docs who are experienced in this area. I live 30 minutes away from mine. Thankfully now I am at the point I only have to go see him every 4 months.

    Each case is a little different and what may work for me, might not for you. Don't be afraid to ask, write down everything as you think of it and take with. If you are like me I will usually get my Lupus fog on the day I go to the doctor and if I don't have it written down I won't remember to ask.

    This is hard to get a grasp on and understand. Read everything you can find, get familiar with it. Keep a calendar and track of what you are experiencing and you may be able to get a pattern going of when the flairs come.

    I am in a flair at this time, I missed one day of work last week, and have tried to keep working. I went to my kids for a long weekend and I am paying for it this week, but I would not have missed it for the world.

    I know you are overwhelmed, but remember one thing you must take care of yourself. Be strong and prayers you can get yourself somewhere that will take really good care of you.


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