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  1. #1
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    Angry First post-33 years with lupus

    Hello! My name is Sallie- I'm not new to having lupus, but I am new to this board (or to any other lupus site, for that matter). I've always sort of "handled" things even though I have had many problems of with my disease, the worst of which being severe kidney disease. I have recently been diagnosed with diabetes (secondary to long time steroids?) and then a month later CNS lupus. Suddenly I'm reeling and feeling like I just need to talk to other people with lupus who may be dealing with some of these same issues...looking forward to hearing your stories.

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    I think you've made an awesome choice coming to this forum! You need all the support you can get. You can check out my blogs about the things that happened to me when my lupus took form. Just wanted to let you know that you are not alone in this battle against lupus.
    Living with Lupus Nephritis is not difficult but just a challenge.

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    Hello Sallie,

    Welcome to WHL. Sorry you are having so many problems lately.
    If you have any questions, just ask. We are here for each other and are glad tgat you have joined us.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    hello sallie welcome whl family please feel free to look at our profiles and message boards we are all here to support one another.

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    i sallie, and welcme.
    i am close to your age, just a couple of moons younger.
    it is nice that you have found us.... sorry that you need to.

    most of us like to care, as if we are family.
    one of the easiest ways to let each other learn a little about ourselves is through our profile page.
    please read mine to know a little more about me.

    again welcome.

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    Hi Sallie, I'm new here, but I will say, this is the board to be at! Such nice helpful people here.

  7. #7
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    Hi Sallie! Your story sounds similar to mine. I have had lupus for 47 years and I too never sought out any site. I found this one by accident trying to find out about a drug called Plaquenil. On your questions about diabetes caused by steroids. I am not a doctor but from my experience, the answer is a resounding
    YES. I first got diabetes when I started on 60mgs of prednisone at age 14. The doctors had me monitor it with diet which worked. When my dosage was lowered, my diabetes went away. then, some 35 years later, it happened again on only 20mg. My primary doctor said it was not the prednisone, which I didn't believe. so I went to an internist who specialized in diabetes. He told me that he could bet that if I got permanently off of prednisone that I would have normal blood sugars. Well, little did I know at that time that I would get a new rheumatologist who would take me off prednisone and put me on Plaquenil! Sure enough...normal blood sugars! To see if that is you, check your blood sugar in the morning and at night. If you take your prednisone only in the morning like I did, you will see that you wake up with good sugar count, but at night or during the day especially, it is high. That is a sign that the high sugars are a result of the prednisone you took in the morning.
    By the way, my Lupus also affected my kidney. After about 20 years, they failed. I went on dialysis for 9 months and then got a transplant from a cadavar. I have had my kidney, his name is Virge because it came from Virginia, for nearly 20 years now. I was truly blessed.
    CNS lupus..........are they sure? What makes them think so? I think it strange that a new kind of lupus would come after all those years. But I am not an expert on that. Take care. Hope to talk again.

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    Thanks for your thoughtful reply! Congratulations on your kidney transplant!! Great story! I do think the steroids have played a big role in the diabetes- unfortunately, I am already on every other lupus med (plaquenil, rituxan, cellcept) and we can't get my prednisone dose down. The Cns lupus dx with MRI and symptoms...I have had some symptoms before (drooping side of face) but just never labeled. Just finished 3 days of 1000 mg infusions of solu-cortex (so much for blood sugar control) which I already feel are helping my symptoms.

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    Good evening Sallie,
    Thanks for the congrats . I am glad that at least they are starting to get the symptoms under control. Perhaps this will be the start of recooperating.
    Don't worry that much about the diabetes for now as first they need to get Lupus contained! How much prednisone are you on right now? I have to admit, I have not been on anything else but prednisone and last was Plaquenil. One of the meds I need to take for my transplant is used for Lupus though....Imuran. Have you ever heard of it? Currently, I'm on no "lupus meds" because of a problem I have with my eyes....not Plaquenil caused but not a good idea to take Plaquenil with this other 'condition'. Hope you continue to improve!!

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    Welcome Sallie!
    Best wishes,

    M

    Lupus, Secondary Raynaud's Phenomenon, Pernio (Chilblains)
    Plaquenil, Amlodipine

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