Just diagnosed with Wegeners Granulomatosis no idea what to expect ?

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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.

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  • Posted

    what r ur concerns? My husband has had wg for the last 15 years. He currently getting rituxan infusions.
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  • Posted

    Hi. I read your post with interest as you started with very similar symptoms as me but I had also developed hearing loss in both ears.  Unfortunately my ENT dept. didn't pick up on it and it went on to develop for another 6 months before a rheumatologist diagnosed WG after I had presented with numerous other symptoms, joint pain,rashes, swellings and peripheral neuropathy in my feet.  Once you start your treatment yours will probably get stopped in its tracks before it can do any more damage to your body. 

    I was diagnosed 12 months ago now and can honestly say that the treatment (cyclophosomide infusions and steroids) have greatly improved my quality of life, despite unfortunately having gained a lot of weight!  I have also had a small operation to insert grommets in my ears which is allowing me to hear normally again for which I am so thankful.

    So try not to worry too much about your future, treatment etc.The consultants seem to know how to treat this illness once it is diagnosed, and I wish you a speedy return to good health - it is not an over night remedy but be patient and positive and I am sure you will get there.  Good luck.

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  • Posted

    https://www.thelaurencurrietwilightfoundation.org/ will give you lots of information and webcasts. Hope this helps. 

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    • Posted

      Thank you so much for telling me about this it has helped me so much through the last couple of months.
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    • Posted

      This support group on facebook had been amazing ! Thank you so much for letting me know I don't know where I would of been without it the last few months !
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  • Posted

    I was diagnosed with Wegener's back in 2001.  My first symptom was soreness and mild bleeding in my right nostril.  Was given bactroban but that didn't solve the problem.  The next symptom I had was scleritis of my left eye.  Was treated with steroid eye drops since the doctor thought I had eyeritis.  Finally was referred to a rheumatologist in the summer of 2001.  She ran several blood tests, including the C-ANCA test.  It came back with a titer ratio of 1:80.  She started me on Prednisone and Cytoxan.  I had a lot of stuffiness and large amounts of mucus and blood in my nose.  So mine basically started as upper respiratory problems.  Then it advanced to involving my kidneys in 2004 and I nearly died.  I had to go off Cytoxan in 2005 as I became sick regularly, plus Cytoxan can cause bladder cancer and you can only take it so long.  I could tell a long story here but will try to keep it short.  Doctor gave me another med and I can't remember the name of it now.  I used to have a flare about every year and would have to increase the prednisone.  The flares where painful swelling in my hand and wrist from where it was attacking the small blood vessels.  Oh how painful it was, but the increase in prednisone helped.  My immune system is still compromised and I seem to get sick easily.  But I will tell you I quit having flares when I got all of the mercury fillings removed from my teeth.  My kidney function is at 26%, having gone down to 20% at one time.  If I kept having flares, my kidneys would have been further damaged and I would probably be on dialysis now.  I will tell you I feel better now than I have in a very, very long time.  From what I have read here, it seems that WG affects different people in different ways.  I did have sinus surgery as my left sinus was closed off by scarring due to Wegener's.  I still have scars in my nasal passages.  I also had a deviated septum fixed.  I used to get pneumonia yearly even with a pneumonia shot.  Hopefully, with the new pneumonia shot Prevnar 13, I won't get it anymore.  Wegener's caused a lot of fatigue due to the anemia.  Prenisone at high doses caused me to gain quite a bit of weight and sometimes my appetite was so strong I couldn't be satisfied.  It was awful.  All I can tell you is try to go with the flow.  Do what you can to take care of yourself.  Be sure you take beneficial supplements like your B vitamins.  Doctors will tell you that you can go into remission but it will return.  I have not had a flare in 6 years - but that is because I believe the mercury fillings were contributing to my problem.  I think my doctors are starting to think there is something to that.  Oh, and I have had to deal with adrenal insufficiency from taking prednisone for many years and not tapering off slowly enough.  However, my adrenals are starting to work right on their own so I can taper off the hydrocortisone.  All I can tell you is go with the flow.  Try not to get discouraged and do what your doctor tells you.  Read up on the disease as much as you can.  Read up on nutrition, etc.  And Pray.  The Lord has really been good to me and I am doing better than my doctors have expected.  It's been a very long road but I kept on hoping that WG was not going to be the end of me.  My neurologist was shocked that I was doing so well after having been diagnosed back in 2001.  He said he has seen a lot of people in the past die because of the lack of treatment.  But medicine has made great advances and WG is studied by many and all my doctors know what it is.  I don't know if anything I have said has helped you, but I just want to encourage you and tell you not to worry and be careful of stress because it really makes things worse.  There is hope of getting better.  Try not to be confused on what you read.  Some of it will apply to you and some of it won't. 
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    • Posted

      Really u believe it is wengers. I have a lot of doubt. I was living in a house with contaimated water by coal ash. Now. I read about that I think if my Dr. Would have known that different diagnosis.
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  • Posted

    This disease affects everyone differently.  Luckily my health was fairly good before I was diagnosed with Wegener's.  Yes same problem with me although, I had a fever, sinuses have been a problem for year's with my allergies.  Such a long story with me, but after many trips to my doctor's office and the hospital, I was admitted with pneumonia right lung from Wegener's.  You will probably have to take medication up to 2 year's to keep you in remission.  I was told this disease is in my nose, been trying to get rid of a sinus infection I picked up from work, on antibiotics again, hopefully I get rid of it this time.  I was hospitalized for 2 weeks.  I had to take medication including high doses of prednisone.  Still on medication and probably will be on medication at least 1 more year.  Fatigue is the worst problem with this disease. 
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  • Posted

    Don't mean to be negative but WG is the worst thing that's ever happened to me went to bed healthy April 95 woke up with deviated septum that was the beginning ESR went to 88 right kidney took a bashing, Scleritis in both eyes, hands ,feet, fingers, joints all swollen and in pain, steroids for 8 yrs solid put on 4-5 stone, all kinds of meds, prednisolone, azathioprine, rituximab and cyclophosphamide chemo bloody hopeless, and trachea stenosis 5 ops and still got it go to Cambridge for treatment hope you don't go thru same thing but on a positive note had WG for 20 yrs it's Survivable don't give up good luck Mikkib28

     

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  • Posted

    R u anca positive? My primary care is frim a rhuemotologist i went on 60mg steriods for three months then started tapering down from there also had 3 infusions rituxamib i have chronic fatigue, leg nuerapathy and shortness of breath i also see several other specialist to make sure other parts of my body are responding well to treatment i was also told that all the blood tests i took tells the drs how well my markers are doing but that they need to compile all the info from all my drs to confirm im doing well i work in commercial constuction and went back to after taking 6 wks off i had to find my limits of how hard i could push myself and found out i'm about at 80% of strength before diagnosis good luck to you and hope you get some help from my reply
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    • Posted

      Hiya

      In remission now - like you, high dose of pred and Retixumab infusions. Preds worsened osteoporosis of the spine and I now need op to have metal rod inserted. I wish you well

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    • Posted

      God I just don't get it. I read no cure but my Dr. say yes ok. I have joint and breathing and fatigue all the time. Can't go at 45 depression and sick that he thinks I am healed. I have pictures and hoareness and throat surgery he says has nothing to do with wengers. I read different. I am so lost
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