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Thread: Recent diagnosis as a "weggie"

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    Default Recent diagnosis as a "weggie"

    After 2-3 years of various ailments, attributed to other things (allergies, kidney stones, pneumonia/bronchitis), I was officially diagnosed with Wegener's in mid February after an open lung biopsy. I'd already had 3 hospital stays since 9/17 (1st since 1979 when I had my last child). I was admitted for about a week. My lungs and kidneys were compromised as well as my red blood count dropped to 6. So, after 3 blood transfusions, multiple CT scans with & WO contrast, ultrasounds, 1000 mg of steroids for 3 days, I had my first Rituximab infusion in the hospital. Tolerated it very well. Had the second infusion two weeks later as an outpatient. First follow up with Rheumotologist was very encouraging. RBC had improved from 9 to 12 on it's own since I'd been discharged. I initially came home with 100 mg of predisone a day and I'm now at 50. Next infusion will be in Sept (6 mos) I'm having terrible "moonface". Not sure how much more my face can stretch! Finally got my sugar and BP stablized from the steroids. If that's what gets me to remission, I'll gladly take it. I'm looking forward to hearing other people's experiences.

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    Default Re: Recent diagnosis as a "weggie"

    Side effects like "moon face" and camel hump tend to go down as you taper off the pred but like a pregnancy there will likely be be some residual extra creases in your face as you adjust to your "New Normal" appearance and life style. The main thing is to get into a drug induced remission as quickly as possible and to maintain it as long as possible with minimum symptoms and discomfort. Then you can work on better eating habits and resuming more exercise and activity to help you look and feel better. You didn't get sick in a day and recovery will take awhile too. Good luck and best wishes for a quick remission that lasts a long time.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Recent diagnosis as a "weggie"

    I've really never been sick so I've definitely struggled with letting someone help me do things I'm just not able to do right now as well as patience in my recovery. Fortunately, I'd already accepted an early retirement incentive before this started back in September so I've not had to worry about working and I have pretty good insurance.

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    Default Re: Recent diagnosis as a "weggie"

    Welcome to this site Vicki. You will learn so much and receive great encouragement. Prednisone seems to be the necessary evil. But you read about people here who have been able to part company with that medication. I still can’t find my cheekbones and even bought some contouring makeup to create some, the result was less than satisfying. Glad your sugar is down. I am still waiting to get that regulated. Are you sleeping OK? Be well.
    Masha

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    Default Re: Recent diagnosis as a "weggie"

    No! I usually only get about 5-6 hours. I stay up late or canít sleep and then wake up really early. Usually Iím starving. Lol. I went from diabetes controlled with 10 mg of Glipizide to 5 shots a day of insulin. Iíve already realized how lucky I am just from some of the other posts. Iím very thankful that I only had the lungs and kidneys comprised but not as involved as some of the other members and that Iíve responded well to the treatment. Trying to get used to the term ďmy new normalĒ that seems to be a regular thing here.

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    Default Re: Recent diagnosis as a "weggie"

    Quote Originally Posted by vickivee1961 View Post
    I'm having terrible "moonface". Not sure how much more my face can stretch! Finally got my sugar and BP stablized from the steroids. If that's what gets me to remission, I'll gladly take it. I'm looking forward to hearing other people's experiences.
    Take time to read the book "Coping with Prednisone". I think it is still available via Amazon. Great read for us that have to unwillingly be on pred for extended periods of time. It is written by a patient and her sister (a pediatric doctor).

    Glad you are starting to see some relief!!!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    Default Re: Recent diagnosis as a "weggie"

    Welcome to the family, Vicki. Sounds like you get the right treatment and on your way to feeling much better.
    Are you still on 100mg pred ? That's a lot. I was on 60mg at my wg onset. When you reduce it, do it gradually and carefully.
    I like your positive spirit. Sending prayers.
    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: Recent diagnosis as a "weggie"

    Will do! Immediately. Hoping my doc will drop to 40 a day when I see him on the 23rd. However, dropping from 100 to 50 didn't make much difference. At times, it seems worse. Thanks for the info!

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    Default Re: Recent diagnosis as a "weggie"

    No. On my first follow-up, my numbers looked good enough that he dropped it to 50 a day. I have a followup once a month and Iit's my understanding that he'll be dropping it some at each visit. Next infusion of RTX is in September. Thanks for the prayers! I'll take all I can get.

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