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Thread: New User - Dx'd 6/12

  1. #1
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    Default New User - Dx'd 6/12

    Hi -

    Very happy to have found you!

    The bullet point version of my story is this:
    • 7 years of chronic idiopathic edema and urticaria, treated with cellcept, prednisone. Astepro and fluticasone as prevention for chronic sinus infections.
    • intense roaming joint pain in May of 2012 diagnosed as RA.
    • coughing up blood in June of 2012, chest X-ray showed masses and bronchoscopy to collect some samples but not to test for WG (TB, Sarcoidosis, The Big C were the focus).
    • woke up from bronchoscopy feeling awful and didn't get better, developed fever. A trip to ER and admission to the hospital - the thinking was "infection" from procedure. Only meds were IV antibiotics.
    • blood tests and lab work back - no infection and all of the previous suspects ruled out - pulmy suspects WG and brings in team. Rhuemy takes charge, all hoping I start showing blood in urine so they can do kidney biopsy, start IV steroids to treat the bleeding in the lung.
    • 7 days into my stay I show blood in urine. Kidney biopsy performed. Discharged on day 8 no longer coughing up blood - or a lot less at any rate and feeling much better on the 'roids.
    • first of 4 Rituximab weekly infusions 3 weeks after leaving hospital. Tapered of prednisone 7 months later and had a great result. 2 flares with joint pain but no other symptoms (more in a minute) and no treatment recommended by rheumy expect monitoring closely.

    Couple of new symptoms I am experiencing now to see if anyone has had this experience and if it's related to WG.

    1) tingling/burning on the tip of my tongue.
    2) numbness on my lip, face and nose/upper airway (had this back in the edema/urticaria days).
    3) spontaneous skin eruptions on my back that look like scratches.
    4) chroic folliculitus on a portion of my scalp (this was occurring just before my roaming joint pain, went away after the WG treatment and is now back).

    I realize this this is minor stuff compared to what many of you are dealing with but I feel better for documenting it with this great community of WG experts and empathizers.

    May God bless you and the great work you are doing.

  2. #2
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    Hi,

    Good to have you with us. You've had quite the set of unique symptoms. I've never had most of them. Mine were ear infection, fatigue, loss of appetite, night sweats, and some lung involvement. I was diagnosed about a month after symptoms appeared. When I had a small flare two years ago, I had the roaming joint pains and blood in the urine. Two rituximab treatments got that straightened out.

    Do you have a wegs specialist? Mine has been invaluable in getting me into a medication induced remission. Right now, I'm taking 20 mg/week of methotrexate, 3 mg/day of pred, and bactrim 3x/week. Hoping to get off all meds by year-end.

    Keep us updated about your progress.
    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! I don't think we compare 'degrees' of WG here. It just sucks, no matter what your particular symptoms. My experience hasn't mirrored yours but it wouldn't surprise me if someone had what you've described.

    Yes, find someone who knows Wegeners to oversee your treatment and keep us updated.

    Lisa

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    Your story is not unusual. Wegs is usually diagnosed by ruling out every thing else that might explain some of your symptoms.

    Your current symptoms suggest some skin problem that needs to be checked out by a dermatologist or two. Our suppressed immune system makes us a higher risk for various skin problems even when we are in a drug induced remission. Mouth sores are also common with Wegs and sometimes require a dental assessment and some treatment. The numbness and tingling suggest a possible involvement in some nerves in facial area and a need for further assessment too. ENT and neurologist might be two options for this. The Wegs can do a lot of damage in our sinuses and ears that might cause some weird symptoms. I think you would want to be sure that something more serious isn't going on. Like a granuloma pressing on some nerves or Wegs destroying some tissue. Many of us like myself lost our hearing this way. I also lost my balance on one side from Wegs.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Hi threegees and welcome to the forum.

    I agree with LisaMac and just say that WG sucks.

    I hope you can find, some comfort and some helpful information, along with friendly people, on this forum.
    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, threegees. I agree with what everyone has said, and if you have to have WG, I'm glad you have found us. I hope you get those new symptoms straightened out and also that you do have an experienced vasculitis doc. This is a great group of people, and you are in good company. I hope you will join in the discussions, use the search function, blow off some steam here if you need to, and keep us updated as to your progress.
    Anne, dx'ed April 2011

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    Welcome threegees, I have never experienced the symptoms you described, but like others have said I would have it checked out. We all have experienced different things. No two of us are alike in this dumb disease.
    Karen; dx'ed April 2014

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