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Thread: 5 months - DX/treated/ & in remission :)

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    Default 5 months - DX/treated/ & in remission :)

    Hi everyone! Merry Christmas

    I joined this forum a few months ago but I have been here quietly reading your posts and replies. First of all, I admire your bravery, transparency, and such willingness to help and support other Weggies! It can be such a lonely journey but together we will continue to fight on! You are all amazing people for being here.

    I was diagnosed Aug 2018 (at 39 years old) by my ENT after having strange symptoms for only one month - severe sinus congestion, hearing loss, & night sweats. (Prior to this I was very healthy with no issues and very active.) I am forever grateful for such an early diagnosis (confirmed with ANCA test) and for my ENT who is experienced in recognizing Wegeners symptoms. Thankfully, I did not have any manifestations in my lung or kidney.

    I was put on prednisone with a taper and scheduled for 4 infusions of rituxan which I completed end of October. I am now in remission and off all medications! (I chose to decline daily Bactrim) I am monitored monthly by my rheumatologist at Mayo Clinic and have tentatively scheduled my next Rx infusion for March. Although, if my testing is still looking this good and I feel this good, he says we will hold off. Im hoping to make it well past the 6 month mark and I am very optimistic about my future

    Since being diagnosed I have made lots of ďlife editsĒ. For starters, I follow a strict anti inflammatory diet - getting rid of all processed foods & sugar (which is unhealthy disease or not), no alcohol/caffeine, lots of fruits/vegetables, bone broth and high quality meats. I started meditating, doing yoga, and finding ways to relieve stress. I have a very supportive husband and family and lots of wonderful, positive friends. I am still active and enjoy all the things I did pre-disease - hiking, skiing, working out. I believe mindset is so powerful. I also believe in taking an active role in your own health and being honest with yourself about the areas that need improvement. For me, this has been most helpful in making sure my treatments work and making sure I feel my best, both mentally and physically. As of today, I am healthier than ever before! (Despite some lingering tinnitus that comes and goes in my left ear - no biggie)

    Today, on Christmas Day, I am so full of gratitude for so many reasons. I am thankful for the amazing doctors and medical advancements that help people manage these life altering diseases. I am thankful for this planet that nourishes me daily, my supportive friends and family, my four dogs, and YOU! Thank you for taking a moment to read my story. I look forward to having a more active role on this forum and offering my support when I can.

    Much love to you all!
    Xoxoxo




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    Default Re: 5 months - DX/treated/ & in remission :)

    Sorry you need to be here but glad you are having such a successful management of GPA.

    There are some benefits to having a serious illness or near death experience, but unfortunately the price of admission is often very high. Learning to enjoy the movement and having an enhanced appreciation of life is one of those.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: 5 months - DX/treated/ & in remission :)

    Quote Originally Posted by drz View Post
    Sorry you need to be here but glad you are having such a successful management of GPA.

    There are some benefits to having a serious illness or near death experience, but unfortunately the price of admission is often very high. Learning to enjoy the movement and having an enhanced appreciation of life is one of those.
    So very true! Thank you


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    Default Re: 5 months - DX/treated/ & in remission :)

    Welcome to our family and thank you for sharing your story. I am glad you have good docs and that you got into remission. Another round of rtx is not a bad option, actually it can even put the wg beast deeper into remission. Anyway, keep an eye on your symptoms and blood tests.
    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.

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    Default Re: 5 months - DX/treated/ & in remission :)

    Quote Originally Posted by Alysia View Post
    Welcome to our family and thank you for sharing your story. I am glad you have good docs and that you got into remission. Another round of rtx is not a bad option, actually it can even put the wg beast deeper into remission. Anyway, keep an eye on your symptoms and blood tests.
    Thank you Alysia! I appreciate that. Iím totally fine with another dose of rtx if itís what my body needs! Wishing you lots of health and happiness into the new year!


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    Default Re: 5 months - DX/treated/ & in remission :)

    You are definitely a big success story, having been diagnosed early on and having access to high quality care and a great support network. (Personally, I'm thinking the four dogs might be a very important part of your support network, since I think dogs are generally better than people.) Best wishes for the new year and a sustained remission.

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    Default Re: 5 months - DX/treated/ & in remission :)

    Quote Originally Posted by Alaskatom View Post
    You are definitely a big success story, having been diagnosed early on and having access to high quality care and a great support network. (Personally, I'm thinking the four dogs might be a very important part of your support network, since I think dogs are generally better than people.) Best wishes for the new year and a sustained remission.
    Thank you so much! I agree, dogs are way better than most humans I would love to know your story sometime too! Happy new year!


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    Default Re: 5 months - DX/treated/ & in remission :)

    Happy New Year to all!! Cheers, vw
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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