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Thread: Lupus on Parade

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    Default Lupus on Parade

    So by this past Friday my Lupus was in full blown flare mode. I am starting to see patterns and symptoms more clearly now that it's happened twice since my diagnosis in January. I am SO TIRED, no energy, and major brain fog. I started yet another short round of presnisone so I'm feeling a bit better today.

    The Plaquinel hasn't kicked in yet. My doctor called me on Friday to tell me that the Lupus is "stubborn" and this is a difficult case. He said that he meets with a regular group of local dermatologists every month and he wants me to go with him to meet these doctors so they can have a look.

    Has that happened to anyone? Has your doctor paraded you around? I am not concerned that this is a bad thing, but I do feel like a freak show!

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    Hi redlily14,

    I wouldn't want to be paraded around with or without Lupus. No, my doctor has not paraded me around. Eeeck!! You are definately not a freak show and I would express this to him.

    I would seek a good dermatologist when you have rashes, and have it biopsied.

    It takes 3-6 months for the Plaquenil to kick in; give it time. If your inflammation is very high, another alternative is cortisone injections every 3 months. On day three, you will feel like a new person.

    I hope you are feeling better.

    Take care,

    Faith 8)

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    The problem with cortisone injections is they react differently for people.

    My boss had cortisone injections in one of his knees almost two years ago. I say him limp for the fist time this week. So with the one shot he's been mr happy snappy. lol

    I've had 3 shots each only giving me relieve for 1 week because of the corrosive nature of the shot, they will not give me any more shots. So I am what I am.
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    Hi Faith,

    The rash was already biopsied in January and it is indeed Lupus. It's very stubborn and keeps flaring, but then I've only been on the Plaq for about a full month now.

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    Hi redlily14

    I've been on it since the first of December...doc says to give it untill may. So far nuffin...but at least it's not bothering me either. How are you making out with it? Have you had any of the stomack upset or lightheadedness?

    Hope it works for ya.
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    Yes some stomach upset and a few extra trips to the bathroom, but nothing too bad!

    My concern right now is my hands. For the past week and a half they have been so weak/tired, stiff and achy. It is getting more difficult to type this. I was eating Chinese food last night with chopsticks and after a few goes my hands were too tired to keep using them. Driving is also very tiring on my hands.

    I wonder if this is the skin Lupus developing into SLE?

    Should I consult my dermatologist with this, or see my internist?

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    My rheumy often has residents with her. I've gotten used to it. Only one at a time - if she had a roomful I'd be less comfortable. I understand that the newer docs need to learn, and that they all learn from each other. I think it is important - but yes.... :? I'd feel a bit like a zoo specimin if my doc took me to a meeting to parade in front of the others there!
    ~"I find hope in the darkest of days, and focus in the brightest. I do not judge the universe." (Dalai Lama)

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    redlily14

    I'ld go see which ever one is easiest to get into see LOL.

    Sorry to hear your hands are acting up. For me I think it's the cold. My fingers dont want to cooperate then it's cold. Course I dont want to cooperate when it cold LOL I just want to live in a warm bath.

    If you go see your rhuemy mention your stomack upset. I dont know if you are taking the same dose as me or not. Mine told me to take both pills as once just before bed with one of those little tubs of yogart.

    Worked like a dream...no tummy troubles...slept right though the night..woke up feeling good. But check with your doc first.

    Hope you're feeling better
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    Hi redlily14,

    I take the Plaquenil right after dinner. Rhuemy said take on a full stomache to coat it prior to meds. It really did help a lot; and cut my trips to the bathroom down dramatically.

    I would see your GP or rhuemy for the problems with your hands. I would not see the dermo; not his specialty. If you can't get into the rhuemy, call your GP. Make out a list; lol, I am going to see my rhuemy Tuesday and do not have a list as of yet. It helps.

    Take care,

    Faith 8)

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    Thanks, Faith!

    Back in December I saw a rheumatolgist. I was only there because my GP was concerned over the blood test results and the face rash. At that point I had no rheumatologic symptoms to speak of. Now it's been three months and my hands ache most of the time.

    Does anyone know...Is it normal/possible for rheumatologic symptoms to occur in this fashion?

    I do not know if I am being a baby or if I have a legitimate complaint.

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