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Wegener's Granulomatosis

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  • jeanene24804 2

    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 ??

    2 replies 0 votes Last reply
  • neha gupta 1
  • Mikkib28 2

    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...

    11 replies 0 votes Last reply
  • brian01158 1


    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...

    7 replies 0 votes Last reply
  • jamie3560 2
  • stephanie80225 1
  • Coee 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?

    1 reply 0 votes Last reply
  • 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 anyone...

    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 and...

    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 he...

    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, besides...

    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 swelling...

    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 hours....

    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 allergic...

    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 cryptic...

    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 last...

    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 pneumonia...

    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 after...

    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 told...

    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 for...

    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 to...

    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 was...

    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 after...

    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 was...

    1 reply 0 votes Last reply
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