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Just diagnosed with Wegeners Granulomatosis no idea what to expect ?

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Mikkib28
Mikkib28

I'm 24 and just been diagnosed with W.G started with unexplained illness's , constantly tired repeated sinus's infections , facial pain which in turn I had a constant blocked nose unusual discharge. Finally got referees to ENT who suspected it was this from my first app. He done tests , which all came back positive. From being diagnosed on Thursday I have my first app on Tuesday for my treatment and a biopsy on Wednesday. Can anyone help me as to what to expect etc so confused with everything online I am reading.

2 likes, 29 replies

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  • jennifer25546
    jennifer25546 Mikkib28

    Posted

    Well my Dr has never did a biopsy and I don't think he knows anything about wengers I hate going to him cause he put rexiumb in me and now he asks like I s m cured. I have stuff that I don't understand and I read about wengers and I read no cure. I have never been sick like I was back in 2010 and still have crazy stuff but he acts like I am crazy I take pictures of joint swelling and breathing problems and tired all the time and I don't know what to do. In 2010 I had no immune system and swollen spleen and fevers and breathing issues always horseness and urinary tract bladder nd kidney hurts but he says this has nothing to do with wengers. Then why did he diagnose me with this. I am depressed and I feel like I know more than him. I hate going to him and paying him.fustrusted
    • Mikkib28
      Mikkib28 jennifer25546

      Posted

      That sounds awful Jennifer , I'm no further forward still haven't started any treatment but feel a little more educated on what's going on but that has only been through reading up myself and a support group on facebook. It is called the Lauren Currie twilight foundation. Can I ask where you are from ? Is there no way you can be asked to be refered onto someone else who would know more about it ?
    • mango15
      mango15 jennifer25546

      Posted

      This is awful to read, I was finally diagnosed after being referred to hospital after 12 months of complaints. Rather than gking through them all, if you look up the symptoms of WG I had all but the skin sores. Thought I was dying but my consultant at royal liverpool hospital was the best thing that happened to me. He is fantastic. You really need to press for a referral or put in a formal complaint at you GP.went through all you are going through and at times was very depressed. Please go back, take with you internet prints of symptoms and different medication. I was diagnosed december 2006 and although told no cure, I haven't been on any medication for 12 months but if symptoms come back, I can get in disct contact with my consultant.

    • jennifer25546
      jennifer25546 Mikkib28

      Posted

      I live near charlotte nc but in my town only 2 rhomotlagist. It's a insurance deal I am sure. Did u read that there is not a cure? I only did ritiumxam treatment and he said I am cured! I have breathing problems and fatigue and hoarse a lot.
    • Mikkib28
      Mikkib28 jennifer25546

      Posted

      Hey Jennifer , search for Lauren Currie Twilight Foundation. And email support explain the situation and they will be able to help you on where to go for a more knowledgable doctor. There is also a facebook close group which has literally been my backbone of support over the last few months so much advice and support available ! I was diagnosed in May , was basically left to figure it out all on my own well up until I found that group. My assigned rheumatologist has not long sent me a letter stating that my levels in my blood are not high enough for treatment so basically I have to just wait and see until it gets worse. I am so so frustrated and I'm sick of the comments "well you look well enough " little do they know how I actually feel. It seems as though you need to look sick to be recognised as ill , anyway I emailed the girls dad of that foundation and he had gave me two doctors I should ask to be referred too plus they do support group meetings every so often with well studied doctors in vasculitis WG etc.one of the doctors he has advised is speaking at it so already there is a tiny shred of hope ! I strongly advise that you search for this or another doctor that can understand the disease better as my ENT doctor says this isn't a wait and see what happens as you can't fix organ failure , such a barrel of laughs lol. His name is Doctor N Balanji also a specialist in this area he is on that website too. I send you best wishes of health and good luck I hope this helps a little. x
    • Mikkib28
      Mikkib28 jennifer25546

      Posted

      Hey just seen where you are from ! I am sure that even though you are in the USA that they will try their best to advise you !! I never realised there wasn't until not long ago , there is some contradicting stuff on the net about it. I have no treaent at all and things just seem to be getting worse !
    • jennifer25546
      jennifer25546

      Posted

      I feel the same. Never sick until I moved into house that I just found out had contaimated water by Duke Energy coal ash. If I could have told er doctors about water maybe different diagnosis. I am scared. Email me at jenwide70aol
    • jennifer25546
      jennifer25546

      Posted

      Thanks I am going to check out .feel free to email me jenwide70aol
  • jennifer25546
    jennifer25546 Mikkib28

    Posted

    I feel the same scared. What is this r the doctor right? I did a rixtomb but still feel like they just give me a diagnosis. I am not sure if he knows. I feel I know more than him

  • aj561
    aj561 Mikkib28

    Posted

    Hi- im 19 and i was diagnosed with wegeners last April (spring 2015). The biggest concern with wegeners is diagnosing it. From the way you described your symptoms, the disease was probably limited to just your sinuses (which is good) and means you probably caught this all pretty early.

    Here's what to expect:

    1. prednisone (steroids)- this is a magic drug but also a double edged sword for you. it will take care of all your sinus symptoms that you mentioned, but at the same time the side effects (which vary person to person) are annoying. For me, my sleep was messed up for a while, I got acne on my chests, and I would have calf cramps when I would try to run. It's fine though, once you taper off high doses those go away.

    2.Rituxan- sounds scary because it's a chemotherapy drug, but its pretty mild. all it did was make me tired for a few days. this will severely suppress your immune system so make sure you avoid getting sick. 

    3. You might flare up after receiving treatment. For me this happened in mid September of 2015. My sinus symptoms started to come back, so I got some blood tests done and they put me back on prednisone and I am getting more Rituxan. Make sure you LISTEN TO YOUR BODY. If you start to experience symptoms that are similar to (or even different but still out of the ordinary) what you experienced before- go get a blood test. It is YOUR responsibility to be vigilant of this

    Wegener's is just going to be another "thing" in your life now. I am a college student and I am fine. You'll be fine, we will all be fine. Use this diagnosis to make you a stronger person and youll be chillen. 

    Good luck to you,

    AJ

     

  • Tr1957
    Tr1957 Mikkib28

    Posted

    I agree with Mikki28 but before you think everything will be all roses after proper treatment and care be prepared for possible setbacks. I was diagnosed back in 1/15 after having a stroke,a kidney biopsy showed me to be ANCA positve. I took large doses of prednisone and tapered offafter a year, i out on wieght and had acne on my back(at 57 y/o?!?!really?) and now have severe neuropathy in both legs with muscle pain also. I went to my nuerologist for tests and maxed out all the pain meds he could give me, when that didn't work he sent me to a pain specialist who has put me on low level pain meds and will increase til we find a comfortable pain level i can deal with (@7-10 pain level) i work in commercial constuction and im not ready to retire. I work 6-10 hrs a day and at night my legs scream at me. But i dont give up i just look at my14 y/o daughter and smile don't give up and work with your drs. Plus i see 6 specialists and compile their data to help formulate a good plan for me- good luck , ask questions , and tell your drs how you feel
  • mellafinger1
    mellafinger1 Mikkib28

    Posted

    I am sorry for your sickness. I had it; WG in both lungs. I was 24 at the time. Married with a little 2yr old girl. I felt fine actually-except if and when I breathed in hard-a sharp stabbing pain in the back (my lungs). Was tested for 6 months this was in 1974-no one had a CLUE. ALL I felt like I must do was ask EVERYONE I met; cashiers, folks in lines behind and in front of me-everyone--''Do you believe in PRAYER'''? Almost everyone did (not sure if thats true now)-and then I asked them if they would mind praying for me as there was something wrong with me and the Drs were not sure What...Long story short; I had Exays of my lungs; 14 Tumors in Both lungs (total). Finally placed in Hospital, Surgeon cut open one of my lungs to take out this Tumor (He had told my spouse he was SURE I had terminal lung cancer/both lungs). He called down to lab to see if tumor was Malignant -NO it was Not. He said I mean the one for My Patient ''So and so''...That IS this patinet. He cut me open again as I was still out; had someone else finish sewing me back up. HE hand carried SECOND TUMOR to lab himself. Stood there while they did test. NOT malignant. SO??? They did more tests for 10 days; FINALLY TOLD ME I HAD W.G. in BOTH lungs--to go home and Get my Affairs in Order...I DID BUT I KEPT GOING BACK to my Savior Jesus Christ and Begging for my life to raise my Little girl and live for Him...8 weeks go by. As I had a RARE disease ALL the DRS , Surgeons, and their Posses met with Me around a HUGE Board rom table. I had been in about 5 days earlier for New XRAYS of my Lungs. They got them out and posted them on the WALL FOR ALL TO SEE. THERE WERE ZERO TUMORS left in my LUNGS. (do not forget I had Started with 14. Surgeon had taken out TWO. WHERE WERE THE OTHER TWELVE TUMORS? God healed me. That is what!!! I do not know you, but I was led to type this up. This is TRUTH. I have NEVER had a 'relaspe' of that terrible disease. I do have some Scar Tissue in my lungs and try to avoid going outside in very cold weather. Other than that? I am almost 66 and Extremely Healthy. I Believe God EXISTS. I Know He healed me. I rejoice and praise him. I will pray right now Mikkib28 for Jesus to make His Holy Self known to you and to bless you and heal you too. God's Holy Name and Blessings upon you, a believer

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