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Thread: Curious...how many members work with this illness

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    Default Curious...how many members work with this illness

    Hi.. it?s Marlene. I was correctly diagnosed with GPA July 2018. I have finished 4 week course of Ritixumab and am still waiting to see results. I?m not the normal Weggie, in that my disease originally presented with my left eye. I?m rheumatologist has pulled me from work, while I?m having treatments and appointments. She signed me out for 6 months....but my job is questioning the length of time my dr has asked for. Has anybody else had issues with being out of work for treatments?
    Thanks

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    Default Re: Curious...how many members work with this illness

    Quote Originally Posted by Marley3562 View Post
    Hi.. it?s Marlene. I was correctly diagnosed with GPA July 2018. I have finished 4 week course of Ritixumab and am still waiting to see results. I?m not the normal Weggie, in that my disease originally presented with my left eye. I?m rheumatologist has pulled me from work, while I?m having treatments and appointments. She signed me out for 6 months....but my job is questioning the length of time my dr has asked for. Has anybody else had issues with being out of work for treatments?
    Thanks
    What was the Doctors reason for you not to be able to work.

    Ive had WGA for 3 years and only missed 3 days of work because I was in the hospital.
    Beside joint pains and felling wore out and shortest of breath. I just push through.
    I found out more you stay active better you feel.

    First year I laid around and thought I was dying.

    3 years later I come home after 11 hour day and try to do something for hour or two before I rest for the day.


    Sent from my iPhone using Tapatalk

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    Default Re: Curious...how many members work with this illness

    She didn?t want me to return to work until I was in remission, which she felt she could obtain in 6 months
    I agree...best to push through and be active. My issue is my sight. Fluorescent lights really kill me.

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    Default Re: Curious...how many members work with this illness

    Quote Originally Posted by Marley3562 View Post
    She didn?t want me to return to work until I was in remission, which she felt she could obtain in 6 months
    I agree...best to push through and be active. My issue is my sight. Fluorescent lights really kill me.
    Wow my Doctor never gave me. Remission time frame. He said it could take years or never and just take the meds to maintain.
    Once the current meds stop controlling it look into stronger medicine

    I know what you mean about the light
    All the steroids gave me glaucoma and bright lights kill in my right eye

    Good luck I hope you are in remission within 6 months.

    By doctor said the rituxan medicine is the next step.

    Please let me how it works compare to methotrexate and prednisone



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    Default Re: Curious...how many members work with this illness

    Tim...I can?t decide if my dr was being optimistic with time frame, or just something she writes for work notes.
    I feel that the Ritixumab has possibly helped me taper from 60 to 30mg. I am still symptomatic, but it was easier coming down than on prior tries.

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    Default Re: Curious...how many members work with this illness

    Each one is different with how WG affects him and how long it takes to get into remission. Working also depends on the kind of work.
    After my WG onset I couldnt work at all for many months. I tried to be back to where I worked but it was too many hours so I quitted. I now work in my own office about 20 hours a week. Hardly enough to make a living but even those hours are not easy for me.
    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: Curious...how many members work with this illness

    It varies greatly. I remember some members who went back to work in jobs that involved heavy physical labor almost immediately. I think one was a lumberjack. Many others were disabled by their GPA and unable to work again in any meaningful manner. Most fall somewhere in between.

    I retired before my diagnosis because as my health was failing from the GPA I didn't feel able to do my work correctly anymore. After my diagnosis and several months of in patient treatment and rehab, I knew I could never work again and was glad I was retired,otherwise i would have applied for disability.
    Last edited by drz; 10-16-2018 at 02:20 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Curious...how many members work with this illness

    I am also highly interested in the response to this inquiry. Diagnosed back in May 2018. I myself went back to work after about 3 weeks (11 of those days in the hospital, pulmonary hemmorage). I took a day off after each of my 4 RTX infusions, but beyond that, I haven't missed much work (desk job).

    To be honest, I'm doing quite well right now (I'm even doing yard work at this point). Just got an all clear CT scan (beyond the nodules that will never go away), and my Kidney function is still in normal range. I'm having ocular pressure issues but they haven't impacted my eyesight, and I did put on 40 pounds (I hope to take off eventually).


    I'm worried though that I am just in the honeymoon phase where I'm loaded up with PRED (currently still on 20MG/day), but once the PRED is tapered/lowered more, this carriage is going to turn into a pumpkin (as it seems to do for everyone once they go off meds).


    I've got a family (almost 7 year old) and a mortgage and I need to be able to work. My greatest fear is that I won't be able to work and we lose everything. My wife even wants another kid (I beg her to let this go, but I get nowhere).


    Right now I'm holding steady, but again, aware it can go to crap at any moment. Would love to know how many out there were able to get another decade or so of work post diagnosis (this is my goal).


    Take Care and Bless You All!!

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    Default Re: Curious...how many members work with this illness

    I left my stressful job shortly after being diagnosed. During that first year I really was not able carry on normal activities, plus, I hated my job anyway. As you all know, stress is major trigger for symptoms. If you like your job and can carry on, it's no doubt a healthy thing to do.

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    Default Re: Curious...how many members work with this illness

    I work full time and have missed about 40 days, but most was before diagnosis. ten years ago
    I have worked in my current position for 29 years and therefore my bosses are super awesome towards taking a couple of hours off for appointments etc.
    I work in administration and accounts, so I do get to sit down all day.
    My travel to work takes 1.3 hours each way, and if I'm not checking in on this forum or on facebook, I am having a snooze.
    My specialists are about 15 minutes away from the office, so I can travel down to them and get back to work afterwards.
    I also have the luxury of my grownup kids working with me, so if I'm having a bad day, then they just step up and cover for me too.

    I find that keeping busy, for me, is better than staying home and worrying about WG and bills and doctors etc
    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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