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Thread: Hi... From London

  1. #1
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    Default Hi... From London

    Hello,

    I discovered this forum yesterday & spent a while reading various posts/threads before signing up.

    I was diagnosed in Nov 2004 & have been in remission since it was treated.

    During the summer of 04, I suffered with consistent ear infections. I was in a lot of pain & eventually (temporarily?) lost my hearing. I saw many doctors in the ENT department. I was in for a routine appointment one day when a doctor said it could be WG, obviously I'd never heard of it before. He took my bloods (& sent them to Australia to be tested) & admitted me to a ward. He also decide to operate the following day, putting grommets in my ears & drained my sinuses.

    I awoke from surgery & still couldn't hear, I was feeling quite scared by this time.

    I was in hospital for a week, during which time they gave me meds (steroids) through a drip, I had a CT scan & an MRI. My hearing improved, the pain eased, & they sent me home.

    I was at home for a few days before the ear ache came back & the hearing deteriorated again. I went back into hospital for another week. They confirmed I had WG (ANCA test, sinusitis, cavity in my lung), put me on medication & sent me home.

    I regained 95% hearing in my right ear, but am totally deaf in my left ear.

    I had one small relapse a couple of years after, when trying to reduce medication, so slowed down the reduction.

    I continued taking medication until about 2010, when I decided to stop. I have been fine since.

  2. #2
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    Welcome AC2...you sound like you are in a good place now...and your experiences sound awfully familiar. Please share your experiences, add your knowledge, and vent if needed! We learn a lot from each other when the 'vents' come out once in a while...really! Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  3. #3
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    Welcome AC2. I'm glad you are in remission. Sorry you had a reason to find us, but happy you did. There is a wealth of information on the site and wonderful people to talk to and get or give advice.

    I was diagnosed in 1972 and other then some minor skin involvement and lesions on my lungs was totally asymptomatic. They made the decision at that time not to treat me. Through the years the lesions would come (they would see them on the Xray or CT) and they would go by themselves and I remained asymptomatic until recently. I was one of very lucky ones. So celebrate your 10 year anniversary this year. (I'm not counting the minor flare.) Whoop it up. You deserve it. Again welcome to the forum and I hope we hear from you again. Any experiences you've had are valuable to all of us.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


  4. #4
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    Hi AC2,

    Welcome to the forum. Your initial experience with this dumb disease sounds awfully familiar. We'd like to learn more about your process for getting off all meds. What were you on? Did you taper your dosages down to zero or quit abruptly? Are you seeing a WG doc now?

    Good luck!! Hope the good health continues...
    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

  5. #5
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    Thanks for my welcome.

    I actually found this forum by accident, but liked the idea of joining, I was just googling to see if there is a link between WG & Sciatica (Another thread I have started) & came across this page.

    I started on Prednisolone & Cyclophosphamide (& was also on some antibiotic, but I can't remember the name). I can't remember when, but the Cyclo changed to Azathioprine. Gradually both the Aza & Pred got tapered down & I stopped taking the Aza. I carried on with the Pred for a while.

    I was then back at home (from Uni) Dec 09/Jan 10, & completely lost my routine, which resulted in me missing my pred most days. I was feeling good, so decided to continue without it. I knew if I had any symptoms, I would need to get checked quickly & would prob have to start taking it again. I saw my consultant about 5-6 months later & was honest about stopping my medication, he checked my bloods and was happy with my decision. I've not taken any prednisolone since.

    I still see my consultant every 3-6 months (He's not an actual WG doctor, but is experienced with patients with it). He's a consultant in the Chest Clinic at St. George's Hospital. If I ever have any concerns or queries in between check ups I can call an get advice/an appointment asap from him.

    I'm due for a check up at the end of this month & have been booked to go for a chest x-ray before my appointment.

    My main problem at the moment is sciatica, which at present, I have nothing to connect it to WG. I'm currently waiting for MRI results.

  6. #6
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    Hi AC2 and welcome.

    I'm glad you found us.

    I'm curious as to why your initial blood tests had to be sent to Australia......I would have thought the UK was up on all of the technology.

    I'm glad you are doing well - apart from the sciatica.
    My husband has suffered from sciatica for the past 24 years and he agrees with what Cindy advised, on your other thread.

    On facebook we have a WG group for Australians and New Zealanders, and one of the members in this group has WG in her lower back/spine.
    I'm not sure about sciatica. She also has inflammation of the aorta and lung nodules, just to name a few.
    The reason I am mentioning this member is because she was told it was WG - therefore anything is possible ........but I hope it isn't.

    We certainly look forward to hearing more from you.
    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

  7. #7
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    Welcome, AC2. Everyone has pretty much said it all. Your story does sound familiar. I had one really bad ear infection and one more minor one, along with 2.5 years of recurring sinus infections before it went into my lungs and I got a dx. I also lost a good part of my hearing and wear aids. I hope you will participate regularly in our discussions, and that you'll find this site as indispensable as I do for maintaining sanity in the face of this crummy disease. There's a lot to be learned here, and a lot of support and caring, and you will feel a lot less alone by being here.
    Anne, dx'ed April 2011

  8. #8
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    Hi AC2,

    Your story is intruiging given your abstinence of regular drugs, power to you my friend, thats brilliant!!
    From your story it sounds as if you may have walked your journey alone, suffice to say that there are numerous support groups here in the UK.
    For a start try Vasculitis UK, a mine of 'local' knowledge for local people (apologiese for the Leaugue of Gentlemen link)
    I live East of you in 'sunny' Essex and we have a great group of Weggies who meet up for drinks and pub lunch stuff, got one coming up in BIllericay on Sat 1st March if you are interested??
    Hope your remission continues, keep us posted, I found this site invaluable when I was first diagnosed, its brilliant!

  9. #9
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    Hi AC, and welcome
    thanks for sharing you story. you give us hope for long quiet years of remission.
    I hope you will continue to feel ok, and recover soon from the sciatica.
    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.

  10. #10
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    Hi AC and welcome..I was wondering if your wg involvement was mainly in your sinuses or did you have any lung or kidney involvement ? Nice to hear you are off your the meds..hopefully someday we can all get there. Hope they get your sciatica better.
    Life isn't about how you survive the storm, but how to dance in the rain !

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