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Thread: Newbie introduction

  1. #1
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    Default Newbie introduction

    Hi everyone,

    My name is Jon & I live in North Nottinghamshire in the UK.

    I will be celebrating my 41st birthday in 2 weeks and up until my diagnosis of WG in June, I have never been seriously ill (aswell as never having heard of Wegener's Granulomatosis)

    I guess certain alarm bells started ringing for me when I started with the runny nose & what I thought (and my GP thought) was an ear infection. I was prescribed a 7 day course of anti-biotics (Amoxycillin) but after a few days I noticed that there wasn't any improvement with my right ear (and I hadn't suffered from ear-ache since probably childhood, if ever!). I returned to my GP who prescribed me stronger anti-biotics (Co-amoxiclav) & referred me for a chest x-ray as my breathing was a bit raspy.

    Can I just add that also at this stage, I had been experiencing disturbed sleep every night by a pain in the middle of my back. It wouldn't hurt throughout the day & would only "flare" up after being in bed a few hours, effectively waking me up in pain. After a good half hour out of bed, the pain would subside, so initially I thought it was either a mattress problem or the way I had been lay down in bed.

    I was prescribed Omeprazole for this as my GP thought it may have been a reflux problem.

    The results of my x-ray came back showing a shadow on my right lung & lumps on both sides indicating the possibility of cancer but then the name Wegener's Granulomatosis was mentioned as apparently I was a "classic" case especially with having sinusitis too. I also had CT scans which highlighted more lumps & nodules in my lungs.
    All my blood tests came back fine so it was decided that I would have a biopsy taken from my nose as by this stage I was experiencing the crustiness that WG brings. This confirmed that I did indeed have WG - Needless to say, family & friends were staight onto the internet to find out more information (with various results from proper horror stories to proper medical diagnosis).

    The next two weeks were probably what I can only describe as horrendous.

    I was prescribed Preds 60mg, Omeprazole, Adcal D3 & Risedronate before I was to begin my course of treatment. I was in daily pain with aches & pains all over my back so was also taking Tramadol & Paracetamol. This lasted a couple of weeks in which I also suffered Faecial compaction fo a whole weekend, being prescribed Movicol that took it's time to work through my sytem (I call this time my "weekend from hell")

    After this time I noticed that my left leg was starting to feel strain in the calf area, feeling like a pulled muscle or sprain etc. It then got worse, swelling up like over double it's size, making it impossible for me to walk on.

    After seeing my Rheumatology consultant he referred me to hospital & on the same day I was admitted. After a doppler scan, it showed up that I had a blood clot about 4 - 5 inch from my groin. I was put on Heparin to start thinning the blood. My water sample was showing bloods +3 so they wanted me to have a kidney biopsy, which came back as showing mild vasculitis.

    It was decided that I would have 6 fortnightly treatments of cyclophosphamide (the last one was on September 27th) & although everything has responded well, my bloods still are +3 but apparently that's something that happens with vasculitis or it may have something to do with the Warfarin I have to take for 6 months'

    Anyways i have now been started on my 5 year "maintenance" course of daily Azathioprine, starting on 50mg a day and I begin my journey of learning what my body can and cannot do.
    My preds have been reduced to 20mg from initially 60mg, then 30 then 25. My weight has also significantly increased from 64.8kg (hospital admittance weight) to currently 79.4kg

    I am happy to answer any further questions & would like to get to know how this condition affects YOUR everyday life.

    I am hoping to start back to work at the beginning of November after being on sick leave since the 10th June. How have you guys coped with any returns to work etc.

    I look forward to hearing from you

    Jon

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    Hi Jon, it's nice to meet you. Your story is all-too-familiar to most of us, but thankfully you were diagnosed fairly quickly.

    I would question that 5 year maintenance course of aza. Wegs specialists are increasingly concerned about keeping us on immune-suppressants for longer than is absolutely necessary. Regular rheumys generally do long courses of maintenance drugs, since they don't see many people with Wegs.

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    Your story does indeed sound like "classic" wegs. Sadly, welcome to our little group.

    The weight gain sounds pretty typical. I wouldn't try to fight it. You can lose the weight, but it's darned hard. 14kg is about a typical gain.

    As for returning to work, it kind of depends on how you feel and how physically intensive the work is. Send a PM to psyborg (bob). I believe Bob is still working....

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    I had a meeting with my bosses and explained what I felt I could and could not do and came to an agreement with them for a trial period. I was lucky and I slipped back into work quite easily with just a few adjustments. Try part time to start with as you are not the same person as you once were nomatter what your brain/heart tells you. If you work too hard then your body has some wonderful ways of telling you the next day. Pace yourself and listen to your body - don't got that extra mile as the next day you may not be able to get out of bed. I know you will push it as we all try it but ........!!!

    Don't know if you have read this but IMO it helps you and others to understand.

    Good luck
    Attached Files Attached Files
    Behind every great man is a woman rolling her eyes.
    Jim Carrey



  5. #5
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    I was diagnosed with WG just before Christmas 2010 and did not return to work until mid July this year. Being a self-employed taxi driver it was easy for me to start doing only three or four hours a day, now I am up to doing a nine hour shift. But have learnt the hard way not to over to do it if I am feeling tired - oh yes WG soon lets you know if you have pushed yourself too hard.
    You give but little when you give of your possessions. It is when you give of yourself that you truly give. Kahil Gibran

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    When I was released from the hospital last May, I was suppose to stay on disability until November. However, I went back to work at the beginning of August. I worked for the week and then got sick with pneumonia (PCP actually). I don't know if working got me sick...but I don't think it helped. This disease is pretty hard core...take as much time as you can to heal before jumping back into work with both feet (as I did).

  7. #7
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    Hello Everyone

    I am new to this site. I am 61 yrs young, and have just been told by family doctor that I have GPA. I am waiting to see another doctor (which is Oct 30/2017) . My family doctor said well we finally figured out what is wrong with you after 2 yrs of you coming in to see me not feeling well. He said you need to see a rheumatologist immediately to start treatment. Well 2 months away not immediately I don't think. All blood work came back "positive for GPA" . So, I guess the next step with this is to see a rheumatologist and go from there. I am so stressed having to wait so long to see this doctor. I just need to know treatment and more. I have so many questions that I need answers too.
    Wish I had more to share at this time, but I don't. Just don't feel well.

    In June of 2016 I was diagnosed with
    Guillain-Barré syndrome (GBS) (immune disorder) and was in the hospital for 7 days having IVIG blood transfusions. I got much better and was doing great and then all of a sudden, I just didn't feel well, fatigue, feet swelling, sick to my stomach, vision just goes and can't see and then it comes back, head feels funny, pins and needles in arms and legs and the list goes on. My family doctor kept saying oh lots of people have what you are having, go home and come back in two weeks. I heard this for many months. Came home crying as I don't feel well. 8 weeks ago, I went back to his office and a women dr was taking over for him, as he was on holdiays. She is the one who ordered the C-ANCA testing and it came back positive. I then went back to see my regular family dr and he just starred at the print out of my blood results and said you need treatment NOW! So Here I sit waiting to see a rheumatologist to get more information and many questions answered.
    I am trying to stay calm, but hard when all the symptoms don't go away.

    Thank you for listening and hope to give you an update soon as to what the treatment will be


    I

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    Your's is not all that unusual a story. I once read that the average dx time for gpa was 24 months and that seems about right. I'm glad they finally nailed it and hope you can start treatment soon. Good luck!

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  10. #9
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    Susan, if you can't get into a rheumatologist, perhaps your family doctor can consult with a Vasculitis specialist. Here's link http://www.vasculitisfoundation.org/map-2/

    Hope you can get started with treatment soon!!
    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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  12. #10
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    Pete, yes I will ask my family doctor to consult a Vasculitis specialist. Thank you so much! I live in Vancouver Canada so i will check the link above and hoping it's for my area. And yes, live life fully
    I called the specialist office today and I now have an appointment for Sept 25th instead of Oct 30th....a bit better..thanks again Pete

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