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Thread: Newbie Introduction

  1. #1
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    Default Newbie Introduction

    Hi everyone,


    I live in south east North Carolina and was diagnosed with WG in May 2017. It has certainly been life changing and I am fortunate it was caught fairly early. I have vastly improved but do struggle at times with setbacks and uncertainty (not that anyone has certainty). This site has been helpful in a couple of hours of reading in many aspects. I hope I can contribute as well in the future.


    My story below that I had written to family, friends and coworkers. I have learned more about the disease and treatment since then, but still have many questions and I know some just depends on how it goes ...

    Take care!

    Keith

    ------------------------------------------------------------------------------------------------------------

    Back in March, I started experiencing random, seemingly unrelated ailments. I originally chalked them up to getting older; even though I've always been healthy. The issues progressively worsened and came to a head Mother’s day weekend. After many days in local and Duke Hospitals, I was diagnosed with a rare auto immune disease called GPA.


    Looking back, early symptoms started with fatigue, allergies, and more colds than normal.


    My right ear stopped up, started ringing and would not get better after several doctor visits (PCP and ENT) over several week. At times, it was causing severe pain all the way to my jawbone and teeth.


    I later injured my right shoulder moving a trailer doing yard work. An MRI showed partial tear of rotator cuff, bone spur, and arthritis. Now I'm pretty sure this was from a previous dirt bike injury 4 years ago that I never got checked out. The pain was likely from GPA attacking the joint.


    The following week, I went to bed fine and awakened with a locked right knee. I couldn't move it more than a couple of degrees. This got better as the day went on and was ok next day. The same day, my middle and index fingers on right hand became numb on the tips and inside edges. This happened as I was sitting in the Orthopedic office for follow up on the shoulder.


    On Mother's Day weekend, the disease started to hit me hard. I had a high fever and started coughing up blood. We went to the Emergency Department Sunday afternoon. The X-Ray and CAT scan showed atypical pneumonia all over both lungs. This was atypical because pneumonia is normally in a few pockets in some of the lungs. The X-Ray looked like all my lungs were filled with spider webs.


    I was admitted to the hospital and treated for double pneumonia; though the doctors were very suspicious this was something bigger. They suspected a type of Vasculitis. Blood was taken multiple times daily to run all sorts of tests. All common infectious diseases were ruled out. Per protocol due to coughing blood, I was quarantined for 3 days to make sure I didn’t have TB.


    The doctors continued to treat for pneumonia with IV antibiotics while waiting for results of specialized tests looking for vasculitis. They were afraid to stop antibiotics in case I had a super infection that was not responding to antibiotics. I later looked into the side effects of the antibiotic; one was joint pain and tendon tears. Great.


    While hospitalized, I experienced severe crippling joint pain that would move to different places each day. One day was shoulders, then knees, elbows, hip, etc. For a couple of days, I had little hope of getting better because nothing seemed to be working and I was in severe pain. I thought there was a good chance I might not make it.


    I was discharged after 4 or 5 days and continued to take the antibiotic by pill while we waited on results. My chest x-rays didn’t look much better than when I arrived.


    The fevers continued to come back every 3 - 4 hours. The bad part was I had to suffer a couple of hours each time because I could not have Tylenol but every 6 hours ... This went on for a couple of weeks …


    I met with my Primary Care Physician and local Rheumatologist after being discharged. They also took blood to test kidney function. My PCP suggested I had GPA disease. This seemed likely after reading about the typical symptoms.


    I received a call the next day from my PCP that I needed to rush to Duke Emergency Department. The blood test result she received showed the disease was now attacking my kidneys.


    I was admitted to Duke after a few hours. They received all prior test results and history from my PCP which aided getting admitted and continuing to confirm the issue was GPA disease.


    I was put on a different antibiotic in case this was a super infection that was not responding to prior antibiotics. After a couple days of more tests; the doctors felt comfortable to start treatment for GPA. Treatment starts with 3 maximum dosage steroid blasts trough IV. The blasts are then followed by large daily dosage of steroids by pills. Thank goodness they started the treatment when they did because this helped quickly with the joint pain, coughing blood, etc. My feet had previously become numb and tingling with shooting pains (still fighting this).


    They performed a kidney biopsy for 100% verification of GPA (no fun, first stab missed the kidney and hit rib / nerves ...); but the results of that special test were many days away.


    I then received an infusion of a chemo drug to suppress my immune system. This is to help keep my immune system from attacking my organs, joints, etc again.


    My kidney indicators had stabilized but were still very high. I was discharged after 6 days. I’m continuing steroids and many other medicines at home, and have follow up infusions (once a week for 4 weeks, then repeat in 6 months, probably rest of my life).


    With a suppressed immune system, I will need to be super vigilant to not be around sickness. My wife is looking to change jobs since she currently spends a lot of time counseling children in daycares and schools. It is regrettable because she absolutely loves the job.


    If you are sick or feeling sick, please stay far away from me.


    The good news is I am doing much better now and will be back in the office next week. The most nagging issue now is the numbness, pain and swelling in my Shrek feet.

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  3. #2
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    Welcome to the forum Keith, and thanks for sharing your story. Sounds like they caught it just on time.
    As for being careful not to catch infections etc., I have few "rules": outside the house I never touch my nostrills, mouth or eyes without washing my hands first. I mostly use a tissue. I wash my hands often. At work and at home I allways keep the windows open for fresh air. Even though I am on immune suppresed meds I was not infected by others, not even when my kids had the flu or throat infection or so.
    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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  5. #3
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    Hi Keith,

    Welcome to the club. I hope you continue to improve. Alysia is correct about hand hygiene (and hygiene in general). Your immune system is compromised. You still have one, but until your disease is stabilized, you won't know how much resistance you have. I just got my annual dose of rituximab, so my system is a bit more compromised than usual. Just have to use common sense...
    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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    Welcome Keith,
    I currently have a cold-type bug with chest and throat problems, but don't worry, my words won't infect you
    Alysia is so right with her regeigm, don't put your hands near your mouth, nose OR eyes, without washing them first. I'd carry a small bottle of hand sanitizer with me at all times and use it before eating or anytime your hand will touch your face. You'll soon start to realise how often this happens such as an itch or you want to rub your eye.

    I don't think your wife will need to change jobs if you follow the above advice.

    I hope your kidney results continue to improve.
    Diagnosed April 1995

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    Yeah I may have been over sensitive when I originally wrote the story, was too soon.

    I was vigilant in carrying a small bottle of hand sanitizer the first couple of months but have slacked off and forget at times. You are right about touching my face and rubbing my eyes; difficult habit to break.

    Fortunately, my wife didn't change jobs. She modified her behaviors some, carrying sanitizer and changing clothes immediately when she gets home if she has been around sickness, etc. This is good as she really is great at what she does.

    My feet are normal size again after a few weeks of Furosemide. They still experience the pins and needles 24x7. I was hoping this would get better over time but I don't think it has much at all. Gabapentin does help. I plan to try to exercise more after reading some related posts here (increase blood flow).

    Tinitus is annoying and gets in my head at times ...

    Most recent issue was nausea / vomiting related to Imuran. I started it 3-4 weeks ago when I got down to 25 mg prednisone (now on 20 mg). It took a couple of weeks before it had that affect on me. My Rheumy suggesting halving and taking morning and night. This has worked so far this week. I get next round of 4 weekly Rituxan infusions in December. I had no issues with those which is fantastic.

    I recognize these are small things in the grand scheme and I should be grateful for the timely diagnosis and progress that has been made. I think I have been lying to myself until recently that it would all go away in a year or so and I wouldn't have to deal with it forever. The ordeal was tough on my family (as you all know), so I try to stay positive for them as well as myself.

    Thanks for the welcomes and advice.

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    Keith, I couldn't bear the Imuran too. It also started as vommiting 3 weeks after I started it. I cut it to half but it didn't help. If you continue to vommit ask your dr for another maintenance med, like methotraxat or cellcept.

    Btw, if you vommit and dehydrated it can cause false higher creatinine in your blood tests. So it is important to make sure you got enough fluids before going to the labs.
    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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  13. #7
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    Hi Keith and welcome.

    Gosh those roving joint pains you had are certainly bringing back some horrible memories for me. Thank goodness, with the correct treatment, they don't last.

    The others above have said it all about hand hygiene, I go as far as not touching anything at all outside of my house.
    I wear sleeves all of the time (even in Summer), and I pull my hand up inside my sleeve to open door handles, flush toilet buttons, push traffic light buttons etc
    I try not to shake peoples hands and if I really can't avoid it, then the sanitizer gets used straight away.

    All the best for your continued care
    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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    Welcome, Keith!

    A quick note for any newcomer, please see the "wegs map" url in my sig block below. You can put your stick pin on the map if you haven't already.

    It appears that the system is dropping all titles. I'll contact Andrew. It probably has to do with the upgrade a couple weeks ago.

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    Default Re: Newbie Introduction

    Quote Originally Posted by Keith View Post
    ...I was vigilant in carrying a small bottle of hand sanitizer the first couple of months but have slacked off and forget at times. You are right about touching my face and rubbing my eyes; difficult habit to break.

    Fortunately, my wife didn't change jobs. She modified her behaviors some, carrying sanitizer and changing clothes immediately when she gets home if she has been around sickness, etc. This is good as she really is great at what she does.
    Just a "me too": I've always been a face toucher, resting my head in my hands, biting my nail cuticles...all bad habits that have been hard to be aware of and stop.

    I work in a public service job and find myself working very close with a diverse array of individuals. I try to be very aware and sharing my needs and sensitivities with my colleagues has been helpful in staying aware. I'm not always comfortable with the hyper awareness others have for me but I'm not ungrateful. I try to constantly be aware of how clean my hands are and try to clean them when I leave from work and when I arrive home from work.

    Quote Originally Posted by Keith View Post
    Tinitus is annoying and gets in my head at times ...
    Yeah, my constant ebb and flow of tinnitus is annoying and sometimes keeps me up at night. It's not nearly as bad as it once was for me and has become easier to tune out. It's also a good excuse to blare the volume of the television or music...

    Quote Originally Posted by Keith View Post
    I recognize these are small things in the grand scheme and I should be grateful for the timely diagnosis and progress that has been made. I think I have been lying to myself until recently that it would all go away in a year or so and I wouldn't have to deal with it forever. The ordeal was tough on my family (as you all know), so I try to stay positive for them as well as myself.
    I like to think that I tend to process my emotions and life's situations well and have a tendency to always look forward, so not moving too fast through this diagnosis and experience has been a challenge. Talking about things and communication is best for me and I'm balanced by friends, family, and partner who keep me grounded and reflective. GPA has a nice way of giving me reminders too.

    For me there was a rush to get back to a "normal" while recognizing that there was no going backwards and that a new normal was here. It could be a challenge and I recognize that it can be harder for others. Ultimately it's a necessary and individual process to go through.

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    Default Newbie Introduction

    Hi vdub,

    I put a pin on the map. I am curious to learn how many folks are living with wg; whether it is increasing, etc. The doctor at Duke told me it affected one in a million. I've seen lower #s elsewhere.

    My wife learned of a coworker's father in law that has wegs in this area. I was very surprised. I think he is in his 70s and went 20 years without a flare until recently. His PCP didn't take him seriously when he pointed out some concerns with his lab work. Now he is paying for it.

    The knowledge and support on this site could helped avoid this.


    Sent from my iPhone using Tapatalk

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