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Thread: New Member from San Francisco

  1. #1
    Join Date
    Mar 2014
    San Francisco, California
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    Default New Member from San Francisco

    Hi All!

    I look forward to perusing the various topics on this site to gain a bit more knowledge about our common malady.

    As background, I'm apparently a bit unusual in that: 1) I'm a male with SLE (we only constitute 10% of SLE patients) and 2) I also have Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma (an incurable form of blood cancer - diagnosed four years ago). What are the odds ? I was initially diagnosed with an autoimmune disorder roughly 18 years ago at the age of 40. My first Rheumy's opinion what that I likely had Rheumatoid Arthritis (RA), but that it could also be SLE (sound familiar to anyone?). At that time I was treated with a combination of Prednisone and Methotrexate for a period of roughly six months until I apparently achieved remission. Fast forward about a decade and I began having periodic issues with joint pain and swelling, but no joint damage. My second Rheumy took stock of my symptoms and lab tests and believed my diagnosis to more likely be SLE, but I failed to meet the minimum criteria for diagnosis so I was classified as Undifferentiated Connective Tissues Disorder (UCTD). In the past two years I've been having repeated episodes of joint and muscle swelling, dry eyes, mouth lesions, edema in my ankles and knees, etc. I've always tested positive for ANA (currently >1280), elevated C-Reactive Protein, elevated Sedimentation Rate and most recently, highly elevated antibodies to Double Stranded DNA (my count was 531, where the lab at the University of California - San Francisco considers anything >75 to be positive). At long last I appear to have landed upon a diagnosis of SLE. My Rheumy at UCSF is hoping to place me back on Methotrexate as I had prior issues with Plaquenil, plus low dose Prednisone (until the Methotrexate takes hold). The only proviso on that treatment approach is to receive clearance from my Hematologist/Oncologist at UCSF to ensure that Methotrexate will not adversely impact my blood cancer (I'm currently on "watch and wait" status following an initial treatment with Rituxan about a year ago that was ineffective). Since my cancer is progressing very slowly at this point, I want to ensure that my SLE is under control as I need all the healthy organs I can keep!

    Anyway, I'm pleased to have found a group for kindred spirits such as we SLE patients. I look forward to participating in the discussions!


  2. #2
    Join Date
    Mar 2011
    pinjarra, western australia
    Blog Entries
    Thanked 1,844 Times in 1,279 Posts


    hi bill, there is quite a few other males who are also here.

    you are not alone
    When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.

  3. #3
    Join Date
    Nov 2001
    Victorville, California
    Blog Entries
    Thanked 1,128 Times in 743 Posts


    Hello and Welcome to our family. I am in SoCal (San Bernardino County) so we are sort of neighbors [lol]. As Steve mentioned, we have many male members here so you are definitely not alone. I am sorry to hear about your cancer, but glad that it is progressing very slowly. I do hope that you are able to find a combination of medications that will alleviate the symptoms of your Lupus but not compromise your cancer in any way.
    I am glad that you found us and that you decided to join our family. Please make yourself at home.

    Peace and Blessings
    Look For The Good and Praise It!

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