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    Default Your personal experiences in treatment?

    Hello,

    I am curious as to how everyones experiences were when diagnosed and how long it took to be in remission from a flare.
    Were you able to work part/full time when receiving treatment? Do the side effects of treatment hinder you?
    I know everyone is different and its very personal the reactions.
    Ive recently been diagnosed and applying for full time work and scared I will end up locked out of the industry if I cant work.

    E.

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    Default Re: Your personal experiences in treatment?

    Hi hi
    Interesting questions.

    I was originally diagnosed in March of 2003. It took until about 2008 or 9 to be in a chemically induced remission and a couple of years after that to be off all immunosuppressants and in 'full time' remission - just taking drugs for all the crap the disease caused haha. I was working full time from August 2003 while still going through IV infusions of methotrexate and sometime Cytoxan. I would get these scheduled on a Friday once per month so I could take the weekend to recover. It still took several days to feel totally ok but the worst was over by the Monday. The treatment definitely slowed me down but not to the point of a full stop. I would run out of steam fairly quickly but I had a desk job so that wasn't too much of an issue. I didn't have any trouble doing my job plus I had a great employer.

    The situation that you are in is one of those times where you need to put yourself first. Don't get yourself into something that's going to drain you constantly. I don't know what industry you're in but have you thought of changing industries? I've done that twice now - for different reasons than the WG - and have a whole new set of skills that I never thought I'd have. But, if you know your industry well then perhaps you'll know which jobs are going to be more of a challenge than others depending on what meds you're on. Might be a bit difficult to come to a decision having just been diagnosed but maybe kick off with a less challenging job? Ideally too, the side effects of the treatment will dissipate as the medications reduce over time (in a perfect world) so consider that you may not be on the same drugs all the time. Once other thing would be to talk to your WG specialist and get his/her advice. They'll also have a really good grip on side effects from whatever doses you may be put on.

    Hope that helps!
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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    Default Re: Your personal experiences in treatment?

    Quote Originally Posted by andrew View Post
    Hi hi
    Interesting questions.

    I was originally diagnosed in March of 2003. It took until about 2008 or 9 to be in a chemically induced remission and a couple of years after that to be off all immunosuppressants and in 'full time' remission - just taking drugs for all the crap the disease caused haha. I was working full time from August 2003 while still going through IV infusions of methotrexate and sometime Cytoxan. I would get these scheduled on a Friday once per month so I could take the weekend to recover. It still took several days to feel totally ok but the worst was over by the Monday. The treatment definitely slowed me down but not to the point of a full stop. I would run out of steam fairly quickly but I had a desk job so that wasn't too much of an issue. I didn't have any trouble doing my job plus I had a great employer.

    The situation that you are in is one of those times where you need to put yourself first. Don't get yourself into something that's going to drain you constantly. I don't know what industry you're in but have you thought of changing industries? I've done that twice now - for different reasons than the WG - and have a whole new set of skills that I never thought I'd have. But, if you know your industry well then perhaps you'll know which jobs are going to be more of a challenge than others depending on what meds you're on. Might be a bit difficult to come to a decision having just been diagnosed but maybe kick off with a less challenging job? Ideally too, the side effects of the treatment will dissipate as the medications reduce over time (in a perfect world) so consider that you may not be on the same drugs all the time. Once other thing would be to talk to your WG specialist and get his/her advice. They'll also have a really good grip on side effects from whatever doses you may be put on.

    Hope that helps!
    Hey Andrew,

    Thats good to hear you could arrange the schedule to once a month on a Friday.

    I am a designer and have been doing internships and even when employed as a junior I will be expected to work pretty hard (which is fine).
    But just long days and working late and no time off is expected, I can't really afford to be sickly when there are 100 other people ready to take my place?
    I interned for the past 2 weeks, 8am-7pm then did not get home till 9pm from travel then up at 5am to go in and my health has been so bad Ive fainted and slept so much at weekend from fatigue.

    I had an interview last week, will hear back Mon/Tues and I am actually scared it will be a yes? I don't feel very able to work right now and I'm not even on any treatment yet.
    I don't want to start somewhere then have to give up due to sickness but I am aware your health is your wealth and breaking yourself for someone else is not worth it.

    Will discuss with my Dr's when I actually see them, and talk about side effects and then it really is a game of waiting to see how I personally react. I could be fine ha.

    You say you were technically active in GPA 2003-2009, I am assuming you felt a lot better rather quickly when being treated, so were not fatigued/sickly during most of that time?

    Thank you x

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    Default Re: Your personal experiences in treatment?

    Quote Originally Posted by cawcawcaw View Post
    You say you were technically active in GPA 2003-2009, I am assuming you felt a lot better rather quickly when being treated, so were not fatigued/sickly during most of that time?
    Exactly yes. During treatment I felt oh so much better but had to keep in mind that I was actually sick and pushing myself would only end up hurting pretty quickly I learned my limits pretty quickly and have been able to successfully hold down permanent work since then including running my own businesses for a few years.
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    Currently but not permanetly residing in Canberra, Australia.

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    Default Re: Your personal experiences in treatment?

    Quote Originally Posted by andrew View Post
    Exactly yes. During treatment I felt oh so much better but had to keep in mind that I was actually sick and pushing myself would only end up hurting pretty quickly I learned my limits pretty quickly and have been able to successfully hold down permanent work since then including running my own businesses for a few years.
    Ah, thats very good to hear
    I guess I just need to try and be patient with myself - no point pushing myself (even if I do feel better) and making more healing for myself.
    Just anxious that I have been working towards full time work and suddenly might have to change my path for a little bit.

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    Default Re: Your personal experiences in treatment?

    Quote Originally Posted by cawcawcaw View Post
    suddenly might have to change my path for a little bit.
    That'll probably happen a lot It makes you more resilient
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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    Default Re: Your personal experiences in treatment?

    I was retired nine months when GPA hit me. My first symptoms appeared in mid-December, and I went downhill pretty quickly thereafter. I doubt that I could have done my job (desk work with a lot of meetings throughout the community) for at least two months. I was hospitalized for a week (diagnosed on the 5th day) after about a month of symptoms, but didnít start feeling better for another week after I was released.

    My doctor suggested that I use good hand hygiene and avoid sick people. Avoiding sick people was easy as a retiree, but would have been very difficult in my last job.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: Your personal experiences in treatment?

    Quote Originally Posted by Pete View Post
    I was retired nine months when GPA hit me. My first symptoms appeared in mid-December, and I went downhill pretty quickly thereafter. I doubt that I could have done my job (desk work with a lot of meetings throughout the community) for at least two months. I was hospitalized for a week (diagnosed on the 5th day) after about a month of symptoms, but didn’t start feeling better for another week after I was released.
    My doctor suggested that I use good hand hygiene and avoid sick people. Avoiding sick people was easy as a retiree, but would have been very difficult in my last job.
    Sorry to hear what was meant to be a relaxing time for you was fraught with all of that!

    I will have to accept my limits and just see how I am day to day once its more under control.
    If I get a job it would be in London, and commuting on the bus or underground, which makes avoiding sick people hard.

    E

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    Default Re: Your personal experiences in treatment?

    @cawcawcaw

    The good news is that I found an excellent wegs doc about 18 months in. She got me into a long-term remission, so retirement has become pretty much what I hoped it would be. Iím involved in my grandkids lives, playing some bad golf, and doing a bit of traveling including 3+ weeks in Europe in 2016...
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: Your personal experiences in treatment?

    Cawcawcaw, it's going to be very difficult to assess how quickly you personally will be able to return to a somewhat normal work routine based on other's experiences (but still worthwhile asking).
    Just before I was diagnosed, but already an inpatient my parents were told that I would not be coming home (i.e. I was going to die in hospital). In other words, things were about as severe as they could get. I had multiple organs involved, including kidneys that needed dialysis.
    Once I started treatment, I managed to return to work, part-time after about 8 months. I think it took about 3-4 months to get back to full time work, but my job at the time was fairly physical.

    Therefore your recovery will depend on MANY things - your age/health before Wegener's became active, how long it took for diagnosis and the amount of damage already caused, which organs are effected, a certain amount of luck (have you managed to avoid severe infections whilst being immuno-suppressed?), how physical (or stressful) is your job, etc.

    The good news is that even though I suffered some permanent damage, I did return to full time work and in some aspects I became fitter than before I had my first dealings with Wegener's - mostly because I made a conscious effort to get fit.

    I have a lot of sympathy for you. I had missed out on some good careers due to my health (we often have to fill in health questionnaires in the UK when getting to the final stages of job interviews). There is also benefits for people who can't work (my current situation), but during the period where you are trying your hardest to work, but can only manage a few hours, there's no help. The system encourages people to give up work and exaggerate their illness as they can't afford to only work part-time and benefit money often pays more than part-time work. I was 17 at the time so although money was tight whilst working part-time, I still lived with my parents, so could still survive.
    Diagnosed April 1995

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