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Thread: Completely Confused!

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    Default Completely Confused!

    I'm really confused about everything about my SLE. No one in my family has it (on either side) and the other ways that people "get" Lupus don't pretain to me, so I'm confused on how I actually got Lupus. 2nd I know that being caucasian doesn't mean that you cant be diagnoised w/ Lupus but I thought it was like a really small % like 8% or something like that. When I found out last year that I had Lupus it was because I was pregnant and got really sick and ended up in the hospital for an emergency D&C b/c the fetus had been dead for over 4 weeks and 2 of those weeks I had been bleeding; anywas I was in the hospital for 2 weeks straight and at the end of my hospital stay they told me I had Lupus, SLE to be exact.
    After a few months of Prednisone and some other useless drugs I finally got down to 10mg of Prednisone only- I was feeling great, ready to run a marathon. But just a couple of months ago my doc put me on some other drug-I cant remember right now- to "control" my Lupus and then he did a kidney biopsy- which came back that my kidneys were severly inflammed- so they put me in the hospital to "aggressively treat" the inflammation- which to them was pumping me full of more drugs (1000mg of prednisone and other stuff) when I got out of the hospital I gained like 50lbs and now they have me doing chemo injections b/c they've heard good results in controlling the lupus when you combine the prednisone w/ cytoxin!
    I had an allergic reaction to that last time, they still want me to do it for another four months....I dont know to me it's all really weird, everytime I'm down to just 10 or 20mg of steriods I feel fine, but then all of a sudden something happens and they have to treat it and they give me more drugs then I feel like crap for the next 3-4 months till they can decrease the amount of pills I'm taking. Before I got "lupus" I had never been sick or even in a hospital, now i'm in there at least 1 week a month, i'm always tired and irratated, my eye sight is shot, I have constant headaches, and b/c of the constant swelling I feel like I've lost all the muscle in my legs, plus now I cant get my blood pressure under 140/100 even if i'm laying in bed at 2am not doing anything and i'm only 21 on 2 different blood pressure medicines. I don't know like I said I'm completly confused...I feel like I wasnt sick before I got prenant, then they diagnosied me w/ lupus and keep giving me these drugs, I just feel like maybe if I quit taking the drugs I might go back to "not being sick" but I'm afaid that since I've been taking them so long if I start weening myself of the drugs something might happen!
    I was just wondering if anyone else might have felt the same way....I have all the "Lupus/SLE" symptoms and I've had all the tests done but deep down I feel like I might have been misdiagnosed or something.

  2. #2
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Lupus is not something we "get", like a cold or the flu. So, I'm not sure what you mean when you say that the way that other people get it doesn't pertain to you. The cause of Lupus is still unknown (and that is why there is no cure). While the exact cause for Lupus is unknown, it does appears that there is an inherited predisposition to develop autoimmune disease in many cases (this does not necessarily have to be your immediate family, it could be inheritied from generations ago and/or from distant relatives). Maybe someone has had rheumatoid arthritis, or someone has had diabetes, or multiple sclerosis, or Sjorgen's Syndrome, or chron's disease...I could go on, but you get my drift.
    Also, there are environmental factors involved. Some environmental factors which may trigger (meaning, it is was always in us, but something caused it to surface) the disease include infections, antibiotics (especially those in the sulfa and penicillin groups), ultraviolet light, extreme stress, certain drugs, and hormones. There is no known gene or genes which are thought to cause the illness. There are recent discoveries of a gene on chromosome 1 which is associated with lupus in certain families. Previously, genes on chromosome 6 called "immune response genes" were also associated with the disease. Only 10 percent of lupus patients actually have a close relative (parent or sibling) who already has or may develop lupus (90% of us don't have a close relative who has Lupus!). Statistics show that only about five percent of the children born to individuals with lupus will develop the illness!

    When Lupus attacks our organs, we may not always immediately feel the results of that attack. Generally they show up in our lab work. The attacks usually cause inflammation of some kind in our organs which lead to serious complications. Some of these attacks on our organs can be life-threatening and increasing steroids and immunosuppresive drugs is the best way to control the inflammation in order to get the organs back to normal functioning. It is unfortunate that these drugs have side-effects that make us feel badly, but not taking them can put you in grave danger of losing that organ and/or your life.

    Because we do not feel the results that we want from some drugs does not mean that they were useless. There is no cure for Lupus. Therefore, there is no drug that is going to make the disease go away nor will any one drug get rid of all symptoms permanently. It takes several medications working together to provide relief from symptoms and to try to reverse and/or stop damage to our organs.

    I would suggest that you try to learn as much as you can about Lupus, how it affects each person differently and how it affects you specifically. Learn what the symptoms of Lupus are and what medications are used for each of those symptoms. Also, learn about the other diseases and illnesses that we can also develop along with Lupus (almost all of us have Lupus along with other diseases/illnesses - such as Fibromyalgia, Sjorgen's Syndrome, Pericarditis, Pulmonary Hypertension, etc.). Learn about the symptoms of those diseases and illnesses as well as the medications used to treat those symptoms. Once you begin to educate yourself, you will not be so confused about your symptoms, your medications or your prognosis.

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Agreeing with everything Saysusie said (of course! She's wise and wonderful)

    I've learned that every condition and diagnosis comes with questions. I'm Caucasian, didn't think a thing of that when I was dx'd with lupus as i knew that it affects people, women more than men. I'm the first in my extended family tree with this condition.

    I also have osteopenia, and a strong family history for osteoporosis. I'm not a small boned Asian woman - much higher risk for her than me, but I'm the one with the condition.

    Don't get hung up on statistics. Each of us is uniquely human - each of us finds our way through our own life's path. Lupus is a truly unique condition - each of us has a slightly different experience with it. Here you'll find community, camaraderie, knowledge and support. No matter what someone faces, there's someone else who's been down that piece of the path, and can offer insight.

    Whitney, I'm glad you've joined us here, I hope you'll find the support and fellowship that has been so important to many of us.

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    Hi Whitney - ditto to everything Saysusie said. Also, your blood pressure problems are happening because your kidneys are not functioning well. They are linked. I also have kidneys problems and at age 30 (and Caucasian), have been on blood pressure medication for 4 years.

    You are not alone. You can get through this. It may be hard sometimes. Come here whenever you need support. That's what we're here for.
    Missy

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