I have just been flagged for Wegeners disease during a routine allergy test

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I am waiting to hear from specialist as I was flagged for Wegeners Disease during an allergy test .  I have a deviated septum and have  been having awful sinus infections and nose bleeds and eventually after " doses of steroids and 3 antibiotics I am a lot better also suffer from mouth ulcers shortness of breath etc .... Doc wont give me much info until I see specialist and I'm worried... any help/advice welcome 

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  • Posted

    Hi Dawn

    You have the same symptoms as my son did this time last year.  He also started with lots of sinus problems.  Antibiotics did not help though.  You should have gotten a chest xray.  You might even want to ask your GP to send you for one.  Try to be a little proactive.  Don't wait for long for the specialist.  Have you had a blood test to check renal function?  This test can also be ordered by your GP.    Good Luck.

     

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    • Posted

      my file has gone missing from the hospital so delay in arranging to see the specialist ... so far I am flagged for this in a blood test and thats it ...my own doc has contacted the hospital but still waiting to hear back 
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    • Posted

      How are you feeling?  Did you ask about the chest xray and renal blood work?  Hopefully you won't have long to wait to see the specialist.  My son started treatment even without a confirmation.  The doctor was confident just by his symptoms that it was GPA.  He got the plasma exchange the next day.  We did not get the confirmation until day 3.  It does not sound like you are bad yet, but if its GPA, you need to protect your kidneys.   Mike is doing better.  There are new treatments and lots of hope these days to make recovery.   Good Luck

      Kathy

       

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    • Posted

      I have been struggling with a dignosis for almost 5 years. 9 months ago I was sent to my third hospital to be diagnosed with GPA. I have never tested positive on a biopsy, my x-rays come back normal (although my lung capacity has fluxtuated), and I was a very weird case, so just keep in mind your tests might not be the "norm." Wegeners is very rare and there are a lot of things unknown to doctors about it. 
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  • Posted

    Dawn, I just got diagnosed with GPA (Wegener,s) in early March.  I had been having hearing problems since September. Then in January I started running a low grade fever at night and having really bad arthritic pains. I went to see my doctor and she did blood work that included a Rheumatoid Factor and Sed Rate. Both were through the roof. She emailed to say it looked like I had Rheumatoid Arthritis.  I got a Rheumatologist to see me the following week. Luckily I was able to get a cancellation. After going through the questions and examination he told me I did NOT have Rheumatoid Arthritis but he was working me up for Vasculitis. I had never heard of that, and, stupidly, felt relief that it was not RA..  Then I looked it up!  By that time I had developed numbness in by feet and my fingers were turning purple, white, then red. (Raynaud's)  I was immediately put on prednisone. It immediately made the joint pains go away but not my feet and hand symptoms. When I started getting bleeding under my fingernails and under the skin of one of my fingers on the backside I was put in the hospital for IV prednisone. They did a Kidney biopsy while there and found I had slight Kidney involvement as well. That confirmed the Wegeners diagnosis so they started me on Rituxan. I will get my fourth and final round of it this Friday. In the USA it's the only FDA approved treatment for Wegeners. I'm still on prednisone and a bunch of other things. I have some heating loss and by hands and feet aren't any better but I do hope I'm in remission because I really don't want any major kidney damage. I am also seeing a nephrologist and an ENT. Where are you from?  I live in New Orleans. My advice is for you to make sure your kidneys are not affected. Kidneys can sustain a lot of damage before you have any symptoms and by then it may be too late. 
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  • Posted

    I went to my own doctor who wrote to the hospital that flagged my bloods ....And 3 weeks later I still havent heard a word ....feeling fine apart from sinus problems and tiredness ...starting to think they got it wrong or I heard wrong ... heres hoping 
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    • Posted

      That's awful.  Just like Deborah said, your kidneys can be under lots of strain now without you knowing it or feeling it.If you have not done so I urge you to get your kidneys checked.  Are you still taking prednisone?  I hope you hear from the specialist soon.  Please keep me updated.  Good Luck
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    • Posted

      Wegener's is a rare disease. Most doctors have never even seen a case of it, let alone treated a case. There are several blood tests that indicate Wegener's. Rheumatoid factor, C Reactive Protein and Sedimention Rate are all high for starters. Then the ANCA test is positive. In the USA they confirm diagnosis with a kidney biopsy. YOU HAVE TO BE PROACTIVE IN MAKING SURE THEY RUN THE RIGHT TESTS TO RULE IT OUT BECAUSE IF IT IS AND THEY DID NOT CATCH IT AND TREAT IT YOU CAN BE DEAD WITHIN TWO YEARS.
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  • Posted

    went to doc today as runny nose yet again and feeling sooo tired .... getting full bloods done on tuesday to check my b12 levels as i have pernicious amenia. still waiting for hospital appointment ...doc today said last blood test showed anca but that it probably nothing ....

     

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  • Posted

    Hi Dawn

    I had a fever and really bad headaches for about a week when I finally saw my own GP wh thought that it might be tempral artiritis.  I was sent for an eye test the next day and came out of hospital the following wek.  They also diagnosed Diabetes but I still had the headaches and an earache which has never ne away.  I too have bad hand an feet which seem to burn" all the time.  After 3 months I saw a rheumatologist who suspected Wegener's.  Unfortunately because  had been on prednisolone fo3 months the ANCA test was negative.  He retired after a ear of seeng him andI had a new rheumatologist who said that his last job was in Edinburgh at the National Wegeer's clinic.  After seeing him for 3 years he decided that as I idn't have a poitive ANCA or biopsy of my nose (even though I had a deviated septum) I should go away and not bothhim again!!  I then changed hospitals and saw a chest specalist who did say that I probably had Wegener's but again I had a negative biopsy (lung) and he sent me to the rheumatologist who had spoken to the ne at the first hospital and came to the conclusion that I had Fibromyagea  I then found a specialist in St Thomas's in London nd when I saw him he said it was definitely Wegener's.  All this took over 8 years and apart from prednisolone I have had no treatment.  I am now 11 years into my illness and am mainly ok.  Please be careful  your kidneys though and my GP gives me a drug which protects them (Losartain)  from both the WG and the diabetes.  Good luck because you can live with it.

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  • Posted

    Yet again on antibiotics  for sinus infection grrrr feeling soo tired and no concentration and still getting fobbed off by doctors.. I have hospital appointment 10th of August in the connective tissue department of local hospital .....anyone know what to expect up there?
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