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Thread: Now I know why I feel so bad

  1. #1
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    Default Now I know why I feel so bad

    I've said it before, but I gotta say it again, flares SUCK! I just left the dr. I have been beyond tired (you guys know what I mean), pain, fevers, swelling, and now my lymph nodes are swelling in my neck. O and lets not forget my rash on the back of my head.
    She said the rash right now is more swelling than anything but there is some rash or lesions on it. IN MY HAIR! Remember it started on my back? This scares me cause I feel like it's slowly going to my brain. And now with the swelling I am really scared. She said my lupus is definitely active, and more than she had hoped with the meds. So we are doubling my prednisone to 20mg every other day. Plaquenil she said is at the highest dose possible at 400 mg a day. She said if the prednisone doesn't get it under control she is taking me off the plaquenil and putting me on a different, stronger immunosuppresant. Do you guys know what usually comes next if plaquenil doesn't work? She said two names and for the life of me I can't remember what she said. O and I had to donate 4 things of blood for testing, she said mainly for my kidneys and liver cause she is worried about them with my other symptoms. I think I have been in denial that it could/would get worse for me. Now looking at it, it's scary and I just want to cry. I usually deal well with my diagnosis and things that crop up but this one is getting to me. I try so hard to pretend I'm ok, when I am dead tired and still push myself to go work every day. I know that probably isn't helping but staying in the bed drives me NUTS!
    O and they couldn't use my left arm for blood today. It simply wasn't happening. I usually alternate them since I have to go so often but looks like that is over too. Why do your veins do that? Are they drying up or what???
    Well at least I know the reason I feel like crap lately, hence the no posts. Cause when I am feeling bad I tend to get more quiet than normal. I do think about you all and hope you are feeling ok. And I do read, but it's hard to post positive thoughts to others when you are feeling bad. {{{HUG}}}

  2. #2
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    My veins, too, flatten out. I think it's the steroids. They have to use baby IV needles...last time in my foot! (ouch)
    I am sorry you are having such a bad time. My doctor is talking Plaquenil too...along with a new steroid that I can't remember the name of. All these drugs are scary. I look up the side effects and get afraid.
    But...my grandma died of kidney failure, which I am sure was untreated lupus. Back then, they barely knew how to diagnose, much less treat, so we are lucky in that regard.
    Hugs and strength to you, my friend. I am now going back to sleep...steroids woke me up at 4 this a.m. I ate breakfast, but need to sleep....love to you, and hang in there...

  3. #3
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    There are several drugs that can be prescribed when plaquenil isn't effective - Imuran, Cellcept and methotrexate are all commonly prescribed for lupus -there are also stronger drugs such as cytoxan which are used when there is significant organ involvement. The medicines your doctor recommends may depend on what symptoms are most urgent in your particular case - cellcept may be best for someone with kidney involvement while methotrexate is good for those with more severe arthritic symptoms. Each drug has its own risks and benefits. There is no one standard way of treating lupus - lupus affects different organs and systems in every patient, so a drug that's right for one patient might be wrong for another. Depending on their particular symptoms, lupus patients may take a variety of medicines from anti-seizure meds for CNS symptoms to blood pressure medicines for kidney involvement -it just depends on the individual case.

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