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  1. #21
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    Quote Originally Posted by luv1only63 View Post
    whew, i found it. thanks. i guess i am still experiencing a flare. it has been over a month since i was given melixicam and now plaquenil. the doc also gave me 2 weeks of predisone but i am not taking it. i am diabetic and have hbp and the steroids causes both to hit the roof. i am always exhausted, severe pain in my lower back, swelling in my abdomen and ankles, nausea, no appetite, headaches, etc. i do my best to shower dress and look my best everyday and my family and friends always say i don't look sick. i have given them written literature and asked them to read it but they still think i am just lazy and don't want to work. that is so far from the truth. this house is driving me nuts and i am not able to much of anything but take meds, sleep, etc. is there any hope? i am the 2nd person in my family to have lupus. the first was a niece that ended up on dialysis and passed on at age 25
    i am also taking anti depression and antil anxiety med, i am so drugged, that the "brain fog" is a normal day for me. i do appreicate this site and thank you.
    The first thing that you need to know is that plaquenil often takes 3 to 5 months to really work. It is a slow thing but it helps many. I also understand you being worried about the steroids but you might really want to talk to your doctor because steroids is one of the front line meds to help knock out a flare. He gave you 2 weeks worth instead of starting you on a daily dose most likely due to the fact that you are diabetic. Take it from someone that "self medicates" way too often (I know better then the doctors). It seldom ends well.

    The fact that we "don't look sick" is a big problem for many. Family and friends seldom "get it" but there is a wonderful story that many of us have used to try and explain this disease. It is called The Spoon Theory and can be found at the link provided.

    I am really glad that you decided to join the WHL family! Please make yourself at home and I look forward to getting to know you!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  2. The Following 3 Users Say Thank You to tgal For This Useful Post:

    luv1only63 (06-07-2011), Saysusie (06-07-2011), steve.b (06-08-2011)

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    Hello luv! Welcome to a wonderful group of people! I too have a rough time navigating on a forum, but slowly I am getting it(grin). Brain fog makes it hard. First of all tgal said it very well. My flairs kick my butt! I am tired most of the time now. My new norm I guess. It took me years of weird symptoms coming and going with co-workers making fun of me and family misunderstanding. Then I grew a large mass in my lymph system that woke people up. I started reading and documenting everything. I was finally diagnosed with lupus and my thyroid was a mess from the lupus. I slowly began to feel much better with meds. I'm now on 7 and I have a good life. Oh I still get sick, but the meds do help me. I hope you find the answers you seek and the validation and support from all of us who "get it" (((hugs)).

  4. The Following 2 Users Say Thank You to lovedbyHim For This Useful Post:

    luv1only63 (06-07-2011), Saysusie (06-07-2011)

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    [QUOTE=tgal;88252]The first thing that you need to know is that plaquenil often takes 3 to 5 months to really work. It is a slow thing but it helps many. I also understand you being worried about the steroids but you might really want to talk to your doctor because steroids is one of the front line meds to help knock out a flare. He gave you 2 weeks worth instead of starting you on a daily dose most likely due to the fact that you are diabetic. Take it from someone that "self medicates" way too often (I know better then the doctors). It seldom ends well.

    The fact that we "don't look sick" is a big problem for many. Family and friends seldom "get it" but there is a wonderful story that many of us have used to try and explain this disease. It is called The Spoon Theory and can be found at the link provided.

    I am really glad that you decided to join the WHL family!

    Not sure if I am responding correctly. went to my PCP today. not only is the rash on my legs and feet but now i have the butterfly rash on my face. I did begin taking the predisone today and hopefully will feel better in a few days. but today is not a good day for me, running a fever, severely fatigue, no appetite, lost 10 pounds in the last 2 weeks. fortunately i have a great personal relationship with my PCP. she gave me a bunch of samples and arranged for me to get other meds at a discount. in 2010 i spent $3,000 co-pay for meds.

    hope everyone else is feeling better today, i was told any day above ground is a good day. so i am trying to encourage myself.

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    Not sure if I am responding correctly. went to my PCP today. not only is the rash on my legs and feet but now i have the butterfly rash on my face. I did begin taking the predisone today and hopefully will feel better in a few days. but today is not a good day for me, running a fever, severely fatigue, no appetite, lost 10 pounds in the last 2 weeks. fortunately i have a great personal relationship with my PCP. she gave me a bunch of samples and arranged for me to get other meds at a discount. in 2010 i spent $3,000 co-pay for meds.

    hope everyone else is feeling better today, i was told any day above ground is a good day. so i am trying to encourage myself.

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    Unhappy Diagnose with sjogren's syndrome

    Hui Im Lisa

    I just recently being diagnose with sjogren's , i' ve read in the Internet that there are some new medication have been approve with FDA with low side effect.
    Is that true? Thank you for your info
    My symptoms are 2 year ago I started to develop mouth ulcers they are recurrent, and than about a year ago I have joint paint especially in the hand, but I still can do activity, I cut my tennis once I develop the join pain, my ear have tinitus, I check blood test my Esr seems normal, except anti ro 52 is pos, Ana also neg. Rheumatologist seems diagnosed me based on my symptoms. I'm confuse.
    I'm 35 years of age.
    I'm afraid to start the medication.

  8. #26
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    hi lisa,
    welcome to whl.
    for a rhuemy to diagnose you on symptoms, not just blood tests is good.

    check out some of the other threads.
    there is one that lists the diagnosis criteria for lupus.
    you need to have 4 of the 11 possibilities to get a diagnosis.
    blood tests is just 1 of them.

    many of us are not happy taking medications, but we need to.
    my lupus is being kept nicely in check by my medication, without it i would be lucky to be living.
    i had 4 major organs involved with lupus, i need my meds.

    again welcome.

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