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  1. #1
    Join Date
    Mar 2010
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    Default New to Forum

    Hello all,

    I am 31 years old female and have been diagnosed with SLE six months ago. I have wandered around other message boards to look for clues about medication, treatments or anything else other people might be doing to help manage. I am thankful to see a knowledgeable and supporting group and community and thought that I could perhaps throw out a question to see if it's happened to anyone else.

    I have been seeing similarities between what is happening to me and symptoms described for mixed connective tissue disease, Sjoegren's syndrome, dermamyositis or polymyositis. Can a person have both SLE and MCTD? Possibly Sjoegren's at the same time? Are there specific blood tests that can help tell those apart or indicate which disease is at play?

    Fortunately, from what I have been reading the treatments for all are very much alike to those of SLE. I am currently on plaquenil, nsaids, steroids and topomax (for migraines.) I have been reading that a lot of people had success with plaquenil, but it seems however that it isn't working in my case. I feel worse, and as doc described, the disease is progressing. On my last visit a couple of weeks ago, she upped the plaquenil to 600mg a day and I will find out in a couple of weeks, if I should continue or add or replace with another medication. Has anyone had to replace Plaquenil and if so, with what? Thank you all in advance.

  2. #2
    Join Date
    Nov 2001
    Victorville, California
    Blog Entries
    Thanked 1,128 Times in 743 Posts


    Hi Dmb78:
    Welcome to our family. I am glad that you found us
    It is very common for people with auto-immune diseases to also have several over-lapping illnesses. Some of the common over-lapping illnesses are Sjgoren's Syndrome, Fibromyalgia, dermatomyositis, Syndrome, scleroderma, polymyositis, mixed connective tissue disease, and rheumatoid arthritis. These diseases are considered to be the family of auto-immune disorders.

    You say that you were diagnosed with SLE six months ago. If that is the case, then it is very possible that you could have mixed connective tissue disease. You see MCTD causes overlapping features of primarily three connective tissue diseases lupus, scleroderma and polymyositis. Mixed connective tissue disease also may have features of rheumatoid arthritis. People with MCTD are often diagnosed with Lupus first. Then, as the disease progresses and other signs and symptoms become apparent, the diagnosis is updated to MCTD.

    How long have you been on Plaquenil? Did your doctor explain that this is a cumulative drug? That means that it can often take weeks to months before you see real benefits from Plaquenil. What type of steroids are you taking? Is it Prednisone? If so, Prednisone and Plaquenil usually work well together to provide relief from your symptoms. Your doctor is taking the best course for you and you are lucky to have a doctor who does this (many here have doctors who do not believe them, who dismiss them, or tell them that they are crazy!). If your disease continues to progress, she may increase your Prednisone or try one of the immunosuppressant or cytoxin drugs (such as Imuran, Cytoxan, Methotrexate etc.)

    I hope that I've been helpful to you. Again, welcome to our family where you will always find someone here when you need!

    Peace and Blessings
    Look For The Good and Praise It!

  3. #3
    Join Date
    Dec 2008
    Blog Entries
    Thanked 94 Times in 83 Posts



    Just to say hello and welcome to the forum,hope tot catch up with you soon.

    Love Amanda.xx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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