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Thread: New member from Canada

  1. #1
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    Default New member from Canada

    Hello, I recently joined your group and have been reading a lot of your info. Itís been very helpful and encouraging. I was diagnosed with GPA April 2020, just before my 52nd birthday, after seeking medical help for various health changes for 3 months. Started with my nose congestion and bleeds, then my ears with pain and hearing loss, then fingers became discoloured and cold, and last symptom was chest pain with difficulty breathing. A medical internist in emergency dept ordered bloodwork which showed a very high level of inflammatory markers and positive ANCA. Had a spot on one lung show on CT. My kidney was also involved but they found a stone too so nephrologist wasnít convinced. I have been on tapering doses of prednisone, had cyclophosphamide 5/6 doses and stopped early July due to reactions. Just had first Ruxience infusion yesterday (bio-similar to Rituximab which recently ended patent). Originally it was planned for mid August but for various reasons (medical fíups) was delayed. Itís been a scary ride for myself, family and friends. Now that the big drugs are done Iím hoping to taper off prednisone and find my ďnew normalĒ. I played and coached competitive soccer until 2 years ago and we ski every winter. I work in community as a nurse and havenít been back since March when symptoms got bad and COVID joined the world!
    Big questions are (1) when to return to work and (2) when will I know Iím normal?? Thanks for listening

  2. #2
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    Default Re: New member from Canada

    @Ljj

    Welcome to the club nobody wants to join. You'll find lots of info and support here.

    I was retired when GPA hit, so I didn't have that stressor in my life. I hope your employer will be flexible and let you work at a reduced schedule as you recover. Also, pay attention to how you feel. You may have some days that you feel pretty well, and others not so much. With COVID, I'd be very wary of returning to a crowded work place where I could be exposed to the virus.

    As for when you'll feel normal, it may take awhile. After disease onset, I didn't really feel like myself for almost six months. One thing that helped me was to resume exercising. At first, I was so weak that I could walk barely 100 yards. I had to build up to my pre-GPA 3-4 miles daily. That took a couple of months. I also had to learn to watch what I eat. I gained a net 25 pounds once I started on prednisone (40-60 mg/day to start). I had lost about 20 pounds during disease onset. Once pred restored my appetite, I blew through my pre-GPA weight and added about 30 more. I'm still about 25 pounds heavier than I was, but the docs aren't concerned as my BMI is at the upper range of normal. My other labs are pretty much normal. The few that are abnormal (eGFR and creatinine) are stable.

    Keep in touch and let us know how you're doing.
    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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  4. #3
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    Default Re: New member from Canada

    It seems very good that you were able to get diagnosed after only having a few months of symptoms. Many of us had to go a few years. We often refer to our "new normal" which varies greatly from person to person. The degree of your recovery depends upon many things. How quickly you were diagnosed and given proper treatment would be one of the most important. Age is also a significant factor as is your degree of physical fitness. Generally younger people or people in good physical shape recover better and faster. Some people are able to resume very strenuous physical work activities and many who have substantial physical damage to major organs have to adapt and downsize their lifestyle significantly. Many people find they are no longer able to maintain regular employment if their work is very demanding.

    The main thing for you would be to learn to accurately assess your physical functioning and needs which will vary from time to time. Many of us have had episodes of delusions of adequacy where we thought we could resume activities we have done for years only to find out it was too stressful and then we would crash and burn. In the worst case scenario you would have a significant relapse but if you learn to pace yourself you will probably find most likely that you can resume a lifestyle very similar to what you had before if you just take your time and let it happen. You may also find yourself having a lot of new symptoms which after a while will become more familiar and with the help of your medical team you will learn how to respond to them appropriately.

    Best wishes for a quick recovery and welcome to our supportive forum. This is the best place to get supportive information and to ask any questions apart from your medical team.
    Last edited by drz; 10-09-2020 at 08:07 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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  6. #4
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    Default Re: New member from Canada

    Welcome to the group. Sorry you have a reason to join, but it was a good move, for sure.Your case sounds pretty typical, which is a good thing, as it could be worse. But in the early stages it does take some time to feel able to work again, for most people. Though some just keep working, maybe with a modified schedule, and others never work again. It's convenient to get it about the time you were going to retire, anyway, but that doesn't sound like the case for you. I was diagnosed at age 58, after 2 years of supposed ear and sinus issues. When it went into my lungs, it was taken more seriously. I have a self-employed pottery business, so there was that flexibility. After a couple of months I could work in a pretty minimal way, then after about 6 months I felt closer to "normal". I got federal disability including retroactive benefits in recognition of having been sick for awhile before dx. Now I am on Social Security, and with Covid, I have not been working on pottery because selling it would put me into crowd situations, even though there would be masks and social distancing required. I am planning to go back to the year-round farmers market where I sell, in November, for the Christmas season. I will see how it goes, as my energy is very low lately, I get out of breath easily, and don't know if it is from WG or something like chronic fatigue syndrome, or just lack of activity combined with old age (I'm 68). I am wary of Covid, but am on a milder immunosuppressant than Rituxin. I saw my doc, a pulmonologist, just last week and my bloods and CT scan were OK. I had a Spirometry test and walking oxygen level test. My doc thinks my shortness of breath indicates I need more exercise. Walking would be the main thing at this point. I also just started online yoga classes. As for you, I can understand your wondering when you can return to work in the medical field, and I'd say just play it by ear, first seeing when you feel up to it, and then assessing the Covid situation at the time. Since your WG was caught fairly early, you are likely better set up for a good recovery and possibly reducing the meds. BTW, I'm glad to hear the patent on Rituxin has run out and others are making similar biologics. Hopefully, if I ever need it, It will be considerably less expensive that Rituxin has been. (Anyone else know anything about this?) So, best of luck to you, and keep us informed on how things are going. PS, I see you are in Victoria, BC, not terribly far from me!
    Anne, dx'ed April 2011

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