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Thread: I've got it -- Lupus Diffus - Nephritis

  1. #11
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    Well, my Nephrologist told me Cellcept can lower many of your lab "numbers", inclluding hct, so I'm hopeful reducing it in another couple months will help my hct, and therefore my fatigue. Other than that, I've been very happy with the Cellcept - few side effects and easy to take, so I hope it works out for you as well. Have you started a remission - do they say? I sure hope so......good luck and thanks for the info.

    Missy

  2. #12
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    Default Hi Christie D

    Sorry it took me so long to get back to you. How are you feeling? Four treatments down, 2 to go, right?!!!

    Don't worry about me & my story! I am so happy to be healthy. I am thrilled if I can help someone else feel better!

    However, to answer some of your questions. My docs tapered me from an initial dose of 48 mg Medrol per day to 0 by my 5th dose of Cytoxan. My face got VERY puffy while on the Medrol, but I would say it returned to normal almost immediately after discontinuing the Medrol. I hope & pray I never have to take that drug again. It made me look terrible, and then as I tapered the dose down I felt severe depression. I compare it to making a deal with the devil. It may have saved my life, but it was hell to be on it!

    Currently, I am only on CellCept, Plaquenil and 1 lowdose blood pressure med. ALL of my tests are normal. I take several daily vitamins and exercise regularly. I think my biggest Lupus trigger is stress. I honestly believe if I can learn to manage stress, I can manage this disease.

    How is your hair? After my 5th dose of Cytoxan, my hair started to grow back.

    Try to stay optimistic and take care of yourself!

    Cindy

  3. #13
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    Congrats, CK, on all the "normal" bloodwork! Isn't it funny what we 'Lupies' appreciate?

    Missy

  4. #14
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    Default Thank Missy

    Yeah, its funny how before I started this "adventure" I never paid any attention to what normal blood pressure was or what my blood work should look like. Now I treasure every day that I feel good and, well, when my test results are normal I feel like its a true gift from God.

    If anything good could possibly come from having a chronic disease like Lupus, I would say that I developed a true appreciation for being able to lead a mundane life. I rejoice in being able to walk my dog, take my son to school, or even clean the house. When I realized that the ability to do any of life's simplest things could be taken from me, it was a real awakening. I just can't get upset about petty things anymore. I don't have the time.

    Can you relate?

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