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Wegener's Granulomatosis

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  • When does facial bloating/swelling go away?

    Wondering how long it will take for my face to look somewhat normal again as I'm being weaned off prednisone. Do you have to be off steroids completely for the swelling to go away or will swelling go away if you're on very low dosage? How long does it take once you're off the steroids for...

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  • Feel greatful

    I'm 49 from buff. was diagnosed in 2014, went to hospital for flu? (I thought) goodthing i went when I did. They hospitalized me,after a few days, had fever, lymph nodes all swollen, high blood pressure, swollen knees and ankles. and docs. had no ans. after endless test still nothing? then kidneys...

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  • Low white count with Rituxin

    My white count has been on a steady decline for the last year. Taking Rituxin every 4 months. Dr says that patients white counts usually don’t go down on Rituxin, but it’s listed as one of the side effects.  Anyone else ? Also, is it normal for the  PR3 to be normal one time and high the next...

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  • Wegener's G with P

    For those of you just now experiencing hearing loss, with GPA, I like to suggest getting Lip Reading Lessons NOW!  There is a possiblity that you will lose ALL your hearing further down the line,  The younger you are, the easier it is to learn lip reading. I am totally deaf now and have to...

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  • Windpipe problems, anyone?

    I have Granulomatosis with Polyangiitis for 4 years now, have kidney problems in the past and now just started upper lung and windpipe problems, Internet has information on G with P Kidney and lung problems but no information on Windpipe closing with this disease, has anyone come across this problem...

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  • Medication Help for Wegeners

    My husband was diagnosed with Wegeners last month. He's currently on IV cyclophosphamide and oral prednisone! We are trying to change to Rituximab(Rituxin?) after reading that there are less side effects to using this new drug. Does anyone have any experience with these 2 drugs? This is all so new...

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  • Tinnitus anyone?

    For those of you with ear and hearing issues with GPA/Wegener’s, do you have Tinnitus also? If so, have you found any relief?

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  • Disability

    I work construction and after my relapse have had difficulty being able to work. My doctor suggested I file for disability. Has anybody else had these issues?

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  • Exposure to lung irratints?

    Hello all! I am trying to get a case study going on Wegner's at my campus, but I need some info to get going on the lead I have. Has anyone here been exposed to large amounts of black mold or other lung irritants(smoke, lead or other heavy metals, coal dust or that from a mine, asbestos, etc.)? If...

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  • Fluctuation regarding C-ANCA (PR3) antibodies test results?

    Hello, I had some blood test for c-anca (pr3) antibodies and I got intriguing results: in November and December I got posivite results, but in January it was negative. Then, again, in February I got positive results from two different laboratories, with one of them showing 40 and the other one 70. Now,...

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  • Wegener's GPA and Nasal Discharge Changes

    Since becoming ill last year, my nasal discharge became milky white, opaque and thick. I have allergies so have good amount of nasal discharge down my throat, especially when sleeping. The change in thickness of the discharge has made it so it feels like I'm choking or can't breath properly when...

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  • Wegeners treatment.

    My mother was diagnosed with wegeners. She has been in icu for a week and not improving at all. She is now on rituxan now and if it doesn't work they will do a plasma exchange. They said that is all they can do for her. Help. Not sure if she is getting out of icu. Anyone ever hear of someone pulling...

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  • Is Rituxin Working?

    Hi, I was diagnosed with Wegners early April. I have just completed my 2nd Rituxin infusion on Dec 5th. I was previously on methotrexate 20 mg and prednisone 15 mg but my doc felt i was only being partially treated due to more nodules appearing in my lungs. I was told by the doc that rituxin takes...

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  • Is Rituxin Working?

    Hi, I was diagnosed with Wegners early April. I have just completed my 2nd Rituxin infusion on Dec 5th. I was previously on methotrexate 20 mg and prednisone 15 mg but my doc felt i was only being partially treated due to more nodules appearing in my lungs. I was told by the doc that rituxin takes...

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  • Facial

    I have been struggling with WG for a while. It is mostly in my face. I have the saddle nose already and now I am having problems with my mouth. The teeth and jaw ate not getting enough blood supply and I had to have my teeth removed. Does anyone have this same problem?

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  • Wegeners with Rituxan

    Hi Guys, I was diagnosed with Wegeners but never confirmed due to Nasal only issues in 2015. I went through some challenges and had some hearing loss and started Rituxan 2016. After Rituxan, i was on methotrexate and Prednisone and Prednisone was tapered off till April 2017. In June of 2017, i started...

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  • Blood in urine

    *Sorry for graphic details* My husband has had Wegeners for 15 years now, he was diagnosed when he was 17 years old. He had his first relapse in 2013 and they started him on rituxian and methotrexate. He has weaned himself off both and has been doing well, despite the full hip replacement 2014 due to...

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  • Waiting for diagnosis. Information.

    Hi Everybody, I haven't been diagnosed yet as the medical guys are still running tests on me. At the beginning of this year I started feeling numbness in my toes and fingers. Since I am type 2 diabetic my GP said it may be related and will send me to a neurologist if it worsens. He was surprised...

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  • New to Wegener's - lost feeling in parts of my body

    After a month of running to doctor and emergency room rashes on my face, nasal crusting and congestion, feet and hands falling asleep, eye sensitivity to light), I was diagnosed with Wegener's in early June. I have lost feeling in 6 of my fingers (thumb, index and big finger on each hand, the back...

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  • Chesty cough, breathlessness and steroids

    I was diagnosed in May with wegeners granulomatosis , took a while but I was finally started on 50mg of prednisone about the beginning of November and in December my rheumatologist has started to bring the dose down due to starting methotrexate. However I feel as though I have a chesty cough all the...

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  • Stem cell research

    Wegners for 2 years in April 2017 . Not a FUN thing to deal with . Iam in REMISSION now it started in February 2017. Thank God I feel like a human being again not 100 % but NORMAL . Looking into STEM CELL RESEARCH has anyone done it yet ??

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  • hi

    So im not sure i have this wegeners but i have nerve pain in feet legs and now hands. Have had the pain in lower for last three months been on gabapebtin now its lead to hands my fingers twitch and im having weakness. Can barely walk with a cane. Two weeks ago was admitted twice to hospital for breathing...

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  • New to wegners

    I have been so ill since september 16 and after seeing neurologist x2, eye surgeon, ent surgeon, dermatologist, rheumatologist and several medical practitioners and bone scans, MRIs I'm still hoping on an answer Monday when I see rheumatologist again. All bloods clear so far but I'm in pain in...

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  • Forteo injections anyone?

    Newly dx'd with Wegener's in Aug 16. Prior to this dx, I had osteopenia. The Prednisone has moved me to osteoporosis, so rheumatologist has prescribed Forteo. I picked it up last month, but it has set on the shelf due to my fear of the side effects so prominently displayed on the warnings....

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  • Inability to talk from Wegener's. Anyone had this?

    During a year of a variety of symptoms from Wegener's I had a short episode of talking nonsense. I was sent to hospital for head MRI and checks to make sure a stroke wasn't involved, & everything was clear. Anyone had/heard of such a thing associated with Wegener's? 

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