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Thread: SLE for 30 years but new to WeHaveLupus.com

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  1. #1
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    Default SLE for 30 years but new to WeHaveLupus.com

    I've come to look in a few times. The lupus sites on Facebook are helpful, but I have family members who are less than supportive and I am tired of worrying about them reading and commenting on my posts. So Hello! It took me 14 years to be diagnosed. I've been on Benlysta for about 4 years as I am part of the study. It works great for me. Married with a dog. My main problem at the moment is neurological symptoms and the appearance of new problems on my MRI.

  2. #2
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    Hi, welcome. 14 years is along time. I hope it doesn't take that long for me! I'm glad you have a dx though. I'm sorry you are having new symptoms. This is a very supportive group so you should find so help here. Are there any local Lupus support groups in your area? It's so hard when the people who love you also suffer from your illness. Maybe they don't know how to support you or what they can do to support you. Sometimes all we need to do is ask for help, which is easier said than done most times!

    Take care and ask any questions you want. Someone will reply with some good advice for you. What kind of symptoms are you having now?

    "I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel." -Maya Angelou

  3. #3
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    Hi Cecelia,

    Welcome to WHL.
    I know what you mean about FB, I don't share when a post shows, that somebody died from Lupus, because I don't want to worry my kids.
    Here you can share anything.
    I am glad, that Benlysta works so well for you.
    I am looking foreward to getting to know you.

    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).

  4. #4
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    Welcome aboard!

    I tried the FB thing for a Lupus support group....and kept getting calendar notices for a members' kids' first b-day party. So, not helpful in terms of support.

    Happy that you're getting relief from Benalysta.

    You'll find members with varying degrees of SLE here--people who have been diagnosed for quite a while (like yourself) and others that are still in search of an answer for their myriad of symptoms.

  5. #5
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    hi, and welcome.

    how has the benlysta helped?
    i am not a candidate for it, but as it is new.....
    it has a lot of interest.
    4 years into the trial, means you were one of the first to try it, as it is now presented.
    i know there was earlier trials.

    if you are up to it..... it would make a great blog.
    i know lots of other people are interested, benlysta is a common subject on here.
    When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.

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