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Wegener's Granulomatosis

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  • CNJ 1


    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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  • CNJ 1


    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?

    0 replies 0 votes Posted
  • karen19113 1

    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 joints,...

    7 replies 0 votes Last reply
  • jac08 2

    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. Has

    1 reply 0 votes Last reply
  • stanbondinc 1

    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? 

    5 replies 0 votes Last reply
  • katie70411 2
  • d04s 2

    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

    10 replies 0 votes Last reply
  • 20yrsandok 2

    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

    7 replies 4 votes Last reply
  • ppaul 1

    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,

    6 replies 0 votes Last reply
  • SophiesMom 1

    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?    

    6 replies 0 votes Last reply
  • eileen49269 2

    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 the

    9 replies 1 vote Last reply
  • ron19819 1

    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

    10 replies 0 votes Last reply
  • sharonamy1965 3

    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

    6 replies 0 votes Last reply

    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?

    1 reply 0 votes Last reply
  • sharonamy1965 3

    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

    4 replies 0 votes Last reply
  • jeanene24804 2
  • Nondas87 2

    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

    6 replies 0 votes Last reply
  • steven09363 1

    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

    4 replies 0 votes Last reply
  • ron19819 1


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

    1 reply 0 votes Last reply
  • sarah42589 1
  • RachW 2

    Husband newly diagnosed and miserable. How can I help??

    My husband (29yo) was diagnosed with WG/GPA a few weeks ago. Our story in a nut shell: Near the end of November 2016 he had a light cough that was disregarded as we had all had a bout of a cold in the house. After 2 weeks, he began feeling really strange-sick, he couldn't explain it, and a few days

    15 replies 0 votes Last reply
  • MichaelsMom 2

    Fatty Liver?

    My son was diagnosed with GPA in 2015.  He never really acheived remission but finally started to feel better when he stopped the cyclophosamide and started Rituxan.  He had a mild relaspe 3 months ago and upped his Prednisone again. He had an abdominal ultrasound that showed a fatty liver.  The Dr

    15 replies 1 vote Last reply
  • maddie26625 2

    Living with GPA Vasculitus

    Hi. I was diagnosed with GPA (formally known as Wagner) just over a month ago. I'm in the middle of chemo treatment and appear to be responding well. I had anemia at too and had seven transfusions. My respitory system and kidneys are affected. I'm a secondary school teacher and have been off work

    14 replies 0 votes Last reply
  • Mikkib28 2
  • dianna49293 2

    Newly diagnosed

    I am 28.. I was diagnosed with Wegener on July 30th of this year. I had been to doc after doc cause I was coughing up blood. No one could tell me wjsy was wrong until my toes started turning blue. They had told me my kidneys failed.. after all that this disease attacked my heart. Any advice on how

    9 replies 0 votes Last reply
  • sarah65055 2

    Wegener's /GPA

    I was diagnosed with Wegener's in June 2009 when I was 68 years of age. I was very sick and was misdiagnosed by a Rhemutologist I had been seeing for several  years. I was also misdiagnosed by a ENT doctor. My ears were so infected that I could not hear. After seeing him over and over all he did

    1 reply 0 votes Last reply
  • Tona S 2

    Symptoms worse after remission

    I've been in remission from wegeners for about 3 weeks after 4 rounds of Rituxan in December. I'm stepping down my dosage of Prednisone. Went from 60mg to 50mg and now am on 40mg. (Monthly). I feel worse than before. Very weak and shaky. No energy. Headaches and a dry cough. Short of breath

    29 replies 0 votes Last reply
  • ganor 1



    17 replies 0 votes Last reply
  • dave170448 3
  • marva06257 2

    Low platelets count

    Has anyone had issues with their platelets count being low? My 10 year old was diagnosed a little over a year ago. He's been on methotrexate for a year. He has blood work every 3 'months and for the past 9-10 months his ANCA test has been negative and his PR3 which was initially over 100 when he

    1 reply 0 votes Last reply
  • stephanie3284 1

    Trachea closing & newly diagnosed need urgent help

    I'm 32 and was diagnosed last week. I was in hospital 2 weeks ago being put under to have a bronchoscopy but they couldn't intubate me so the procedure was abandoned and I saw and 2 ENT's who suspected WG. At an ENT clinic last week It was confirmed.                                                  ...

    5 replies 0 votes Last reply
  • jamie3560 1
  • viktorie70910 1
  • Yuridia42 2

    How do you deal with the terrible headaches?

    Hello all, I'm new to the forum. I was diagnosed with wegeners in 1995 when I was 20 yrs old. I have been in remission for 20 plus years, which from reading this forum I know I've been lucky. I've been really sick for the last four months and the Dr's have been treating me for sinus infection and

    4 replies 0 votes Last reply
  • jemmalyn84 2

    Rituxan & Ear Pain- How long for Rituxan to work?

    Hi all! How long does it take for rituxan to work and for you to feel better? I have Wegeners and have been dealing with flare ups in my ears and sinuses that are extremeley painful and excrutiating that last two years. I have been fluctuating with my prednisone doses (ranging from a high of 60mg)

    20 replies 0 votes Last reply
  • gucci29197 2

    My Experience with Rituxan for Everyone to see

    Hi Guys, I wanted to post my experience with Rituxan so everyone know what i went through. You can read another post of mine as to what symptoms i have. Basically Nasal and then hearing loss. Today 2/19/2016 went for one rituxan treatment. I was very nervous due to the side effects. Basically

    11 replies 1 vote Last reply
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