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Thread: New here, not so new to WG

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    Default New here, not so new to WG

    I have been following this forum for over a year and had many attempts to sign up. Super excited that it worked this time. I feel like I already know many of you. I have celebrated succsess and cried at the loss of friends over this past year. WG has impacted my life but at this time I am doing well. I have had Rituxin and responded well (last dose 8-2012) thrilled to say that I am down to 1 mg of prednisone hoping to be off soon and continue with the maintenance of Methotrexate 12.5mg. I am so glad that I am able to once again care for my children, They sure keep me busy. I have also returned to work as RN in the NICU (with premature babies) it is a safe place for me in the hospital they are early but not infectious. I had to give up working pediatrics. I only work part time not sure if I am tired form WG or chasing four kids around but either way that is what works for my family. Looking forward to getting to know you all better.

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    Hi lolsen,
    welcome to the forum. you know this place better then me. Im here only a month and half. but Im feeling it is a home. weggies home. caring and comforting.
    it is great to read that you are doing so well with your WG
    I got my first rtx only a month before, and Im still waiting for it to start working. how long does it take ?
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  3. #3
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    Alysia, I had four treatments of Rituxin shortly after I was first diagnosed, once each week then I was slowly weaned from the prednisone. I cannot say when it started to work for the prednisone was masking my symptoms but I was able to wean without my symptoms returning. I had a flair about 10 months later went back on pred until I received Rituxin again (this time two infusions) then once again weaned the prednisone almost off. Holding my breath waiting for the next flair. I am also on methotrexate 12.5mg so hoping maybe to make it longer than 10 months this time. WG is overwhelming especially at first I have compared it to playing chess with my friends the first time you play it is very difficult to learn how each of the pieces work and move (all the meds) but once you learn how your body reacts it becomes more predictable and easier.

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    Welcome lolsen...good to have you on finally! As you know, this is a great place to be for us Weggies, albeit, we'd rather be doing something else I'm sure! Sounds like you have a handle on your WG...must have good docs! So important as you know. Keep the site informed, nice to have another medical person on...sometimes some of us (moi!) just don't get the terminology or explanations without help! Best to you!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Welcome from me, too, lolsen! I'm sorry it took you so long to get on here due to technical problems of the system. I do remember learning a lot and getting to know people on here before actually joining or posting. It is really the greatest place to be, and to me, absolutely essential to understanding WG and all the facets of its symptoms and treatments. And what a great group of people! I'm so glad you are here now, and I look forward to hearing more from you. And I wonder if you or Don noticed that you live very near each other.
    Anne, dx'ed April 2011

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    Yup Anne, we got it! Already sharing PMs! LOL!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Yay Don, we finally have someone close by you that can come and drip feed you, of your much needed coffee - if required

    Welcome lolsen. I am so glad that you could finally join us.

    Down to 1mg of pred is amazing - I'm currently stuck at 3mg

    We look forward to your input in the group.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Welcome lolsen...nice to have you here with us.
    ~ Bob

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    Glad to have you with us. It sounds like you are receiving great tx and are doing very well. I wish you continued improvement. Looking forward to any questions or comments that you may have.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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