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Wegener's Granulomatosis

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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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  • 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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  • 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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  • 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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  • 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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  • 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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  • 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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  • 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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  • 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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  • 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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  • 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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  • happy 20th year anniversary from me

    I am writing this in celebration of surviving a diagnosis of wg for over 20 yrs. s 29 and was so scared of not living to see 30. It all started in august 94. My husband and I had just moved to his childhood hometown.  For me it started in my eyes and with joint pain in my hip. I went to the dr and...

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  • Wegener's Granulomatosis and vaccines

    Hello, Anyone knows anything about vaccines, whether they are good or not after you are in remission? At my work place, there is an offer for whoever wants to travel to India, to our company's HQ there, but I know that you must have vaccine against tetanus, typhoid fever and a few other as well,...

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  • Question about ANCA scores

    Newly diagnosed last summer.  My C-ANCA and P-ANCA are both now in the negative range as of yesterday (yay!), but my PR-3 Antiproteinase is now Positive.  (It wasn't on earlier tests).  What does this mean?    

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  • ive had wegeners for 4and 1/2 years

    im 61 years old i still work someone having alot of mucscle spacisms  the gabapentin400mgcap its for nerves its non narcotic of course ask your doctort.i good this desises in my eye.i had radiation 3 times it keeps this at bay.i have good hours anion with anything elseduntts to much i cant f bad...

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  • Please help... how likely is it?

    How likely is it that I have Wegener's disease? After coughing up blood for 2 months I've just found out I have nodules on both lungs through CT scans. I can tell from the blood tests Doctor ran he suspects this disease. Awaiting results and a biopsy. I have a 3 year history of year round "non...

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  • New to this

    I was just diagnosed in January. I was in prednisone and now on Azathioprine. I was doing great. I had a lot of stress lately and now most of my joints really hurt and I don't want to move. I am also having issues with my ear but that is more mangeable. Is this normal?

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  • Really need help.. difficult case.. can anyone help me please?

    I cannot get a diagnosis after 2 years of high doses - 60 mg prednisone and a recent start on immune suppressant axathioprine which is having no affect thus far. I have most symptoms of wegeners, the most prodominant being copious thick green blood tinged phlegm from throat and nose. They say it's...

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  • Retuxin every 6 months

    I was diagnosed with wegners granulomatosis almost 2 years ago. Originally they treated me with prednisone and retuxin. I was on prednisone for about 18 months. I first did 4 retuxin treatments in 4 weeks. 6 months later I did another 2 treatments over 2/3 weeks. It's been over a year since my...

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  • Doctors puzzles

    Greetings from the US. My daughter was diagnosed with Wegener's 18 months ago. Her affected area is her kidneys. She completed cytoxan and steroids and was deemed in Remission last November of 2015. Over the course of the last 6 weeks she has been hospitalized with pneumonia. Since the pneumonia...

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  • GABAPENTIN 400MG

    Gabeapentin  helps with mucsle spacems Ive have wegeners for 4 years I have sever mucsle spacem all through my body his stuff works

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