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Thread: Hello there, I have just been diagnosed

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    Default Hello there, I have just been diagnosed


    Hello My name is Becca im 28 years old and until July 15 2007 I had a clean bill of health.

    Heres my story...
    On July 15, my husband and our 4 kids went to my shop picnic. I made sure like any mother that all the kids had sunscreen on, and I never thought about myself. We were there all day and I didn't realize that I had gotten such a severe sunburn till later that night.
    A few days later I began to get a strange rash on my face, just under my eyes and on my left shoulder that got worse everyday.
    I thought I had sun poisioning and so did the DR. I was pout on prednisone and in a few days the rash was gone. I was off the prednisine only 2 days when the rash came back 2 times as bad as it was this time not only under my eyes but my whole face my whole left shoulder then my chest and back.
    I began to experience terrible pain that was un imaginable I literally felt like I had rigimortis! I was so stiff and all my joints hurt and every muscle hurt to the touch. I couldnt use my hands at all and mornings were the worst.
    My mother told me to get checked for lupus, her having it herself and also fibermyalja said it sounded like I may have it too.
    I also discovered that my grandfather had polymyositis and dermatosytis.
    I told the dr about it at the next visit and the tseting started months of testing and skin biopsys. But on september I finally got an answer..I had lupus.
    I was put back on prednisone and the pain and inflimation was gone within days and the skin rash desipated too.
    I have to go see a rumotologist still and have more tests because im showing signs of myositis, and I hope they find out soon cus lately I feel like a human pin cushion!
    I would love some feed back on anyone elses expierences because theres still so much I dont know.
    Has anyone been on prednisone and were the side sffects bad because im not tolerating it very well I dont think.
    Thanks for taking the time to read this and again I would love some feedback.
    Becca

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    Welcome Becca!

    You've had a difficult time of late! I'm always amazed at how many tests my Rheumy wants to run - one time they took 8 vials of blood, plus the urinalysis. :roll: I'm sure everyone here has similar tales to tell.

    Many here have been on prednisone, I'm probably one of the few who's managed to avoid it so far. Some of the others will chime in, or post questions / experiences on the "symptoms" board - you may hear from many more there.

    I'm glad you've joined us,

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    Hi Becca,

    Welcome... I guess ants aren't the only one to ruin a good picnic.

    What type of experiences do you want to hear..the good, the bad, the ugly..or all of it. We have it all.

    I have SLE and Sjogrens Syndrome...itchy on the outside and dry and achy on the inside. Current drugs, Plaquenil, Ultracet, Protonix, Naproxen. Prednisone once for Lupus and twice for cervical spine surgery. I have a bout of pleurisy now...hopefully it will resolve so I can avoid the steroids. I gained weight, puffed face, cranky at times...

    Have you dosed with Plaquenil, anti-malarial?

    There are many books on Lupus. I recommend The Lupus Book by David Wallace, MD to start with. His is more clinical..but others out there have Lupus stories with medical advice, alternatives and etc. Check 'em out.

    And I ditto Hatlady...surf the Symptom and Medication Forums. You'll find us there too. Our stories.

    Look for us,
    Oluwa

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Becca;
    I see that you are already in good hands. I just wanted to also welcome you to our family where you will always find people willing to help :lol:

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

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    hi becca

    my name is becky to. i was just diagnosed in aug. they waited all summer to be sure and watched my signs and symptoms.i was in the hospital on and off all summer. i had liver enzymes at 1248. i now have cirrohsis of the liver. they call it llupoid hepitits. they thought that my liver was causing my symptoms. when my liver enzymes went down my symptoms were still there. i take praqiunel, predisone ,cellcept, levoqine spelled wrong but its for hypothyroidism. protonix, effexor, and 50,000 units of vitamin d per week. i have no insurance. i just signed up for disability. i cant work. my energy level is so bad and i never go a day without pain in my feet and pluerisy pain. i was in second semester nursing when i got really sick. i really worked hard to get that far, but theres nothing i can do about it now. iam sure God still has a plan for me.

    take care becca

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