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Thread: Diagnosed with lupus yesterday

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    Default Diagnosed with lupus yesterday

    Hi all! I was diagnosed with lupus by my rheumatologist yesterday, and kind of went into shock after hearing that. I nodded and listened to the rest of what he said, but don't remember much of what he said after that. I have three prescriptions that I am supposed to fill today and start taking; Acyclovir, Medrol, and Imuran. Maybe I'm in denial a bit, but I'm worried maybe I don't have lupus and what if I don't and am taking these strong meds.

    My symptoms: over the last 18 months- joint pain (especially in the morning) starting in my feet and eventually moving to my hands, 2 low-positive ANA tests of 1:80 homogeneous (done 3 months apart), extreme fatigue and brain fog (especially in the afternoon and evening), low white blood cell count, fevers and swollen glands. I took a 3-week course of Prednisone last month and felt like a new person. Tons of energy and no joint pain at all. I felt "normal" again. When I went off the Prednisone, all of my symptoms gradually came back.

    I'm really scared to start taking the medicine, especially the Imuran. My symptoms seem so mild compared to some of the others that I've been reading here! I have had no rashes or hair loss. Does this sound like how lupus starts?

    Thank you so much to anyone that replies. I feel lost right now.

    Julie

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    hi and welcome,
    let me start by saying we are not doctors .....

    lupus is diagnosed by understanding symptoms and blood test results.
    there is no exact test for lupus.

    if you have been diagnosed before you have organ involvement ....
    then you will not have the symptoms of organ involvement.
    this is a good thing.

    my suggestion is to take the medication and also ask for a second opinion.
    you are always entitled to ask for a second opinion, and it is not unusual to do so.

    may i say that if you do not have organ involvement, and the balance of medication is correct ......
    there is a good chance of you leading a near normal life.
    everyone reacts differently to lupus and its medications
    lupus is your immune system in overdrive, so there is not steadfast way that lupus should react.

    please read some of our older posts .......
    there are our personal journey with lupus.

    also use the search function .......
    it is a very good tool to find threads on a particular subject .

    again welcome
    When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.

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    Saysusie (06-28-2014)

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    Hi Julie, Just wanted to say I agree with Steve. You might be able to avoid some of the real bad side effects of Lupus by taking the meds this early in your diagnosis.I can't stress this enough.My Lupus started off just like this,but I didn't jump on it and if I had then maybe I could have avoided all the problems I now have. Good luck with this.Remember to find a doctor who you trust,and TAKE your meds! Shanna

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    Saysusie (06-28-2014)

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    I agree with both Steve and Shanna, Lupus is not an easy disease to diagnose. Once you've gotten the diagnosis, you can be assured that your doctors have already ruled out a plethora of other possibilities before tests, symptoms, and labs confirmed Lupus.
    I also agree that, being diagnosed at this early stage is a good thing. But, it can quickly turn into a bad thing and even become life-threatening if you DO NOT take your medication. Taking the prescribed meds now will hopefully prevent the disease from escalating and possibly cause organ damage.
    It is good to seek and arm yourself with knowledge and I am a strong advocate of doing so. However, it can be quite dangerous to second guess your doctors and not follow their prescribed regimen.
    We are here to help you in any way that we can. This is a difficult disease and being newly diagnosed can be frightening. Please do not hesitate to come to us with any questions that you may have or to seek information and/or advice. We are here for you!

    Peace and Blessings
    Namaste
    Saysusie
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    Thank you so much, Steve, Shanna and Saysusie. What you're saying makes sense and was just what I needed to hear. I know in my heart the doctor is right, but taking that first chemo pill is hard! I started chemo on Friday and so far it hasn't been bad at all. So thankful for a community like this.

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    Remember, this chemo medication is at a dose much, much lower than that used for cancer patients or for organ transplant patients. So, while you may experience some side effects, they will not be nearly at the level of those taking a higher dosage. I am glad that you are tolerating the medication and I do hope that you continue to do well on it!

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

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