Awaiting WG diagnosis

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Hi, Just turned 39 year old married father of four. Pre Xmas last year suffering with chest pains & a full MOT highlighted hyper-tension. For the last 8 months or so I've been suffering severe joint points. Some times to the point of making me totally unable to walk (knees, feet, ankles, hip) as well as pains in my elbows, hands, wrists (carpul tunnel surgery 3 years ago), shoulders & even my jaw. Initially gout was suspected due to slightly high uric acid in the blood. Approx 3 months ago came down with a bad cold that turned to Sinusitus two months ago which is still present. Three weeks ago or so whilst feeling very poorly one evening I coughed up approx half a pint of fresh blood (cough had been persistent). Numerous tests have been done which show high CRP & all the other associated indicators, protein & blood in urine, an enlarged node on right lung. Also lost stone & a half in weight in last three months. Letter from hospital yesterday advising \"spurious\" result re ANA & C-ANCA in blood. Hospital are treating me for WG (Prednisilone) but want to do a Sinus bioposy but I have not had nasal crusting & as such they want to operate & scrape from the apparant enlarged walls of the Sinuses. has anyone else suffered with Sinusitus without crusting?

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  • Posted

    Yes with WG any combination of WG-related symptoms could be active. Get it checked out, see a rheumatologist have them test until they find the WG or verify it’s something else. Mine was thought to be nasal involvement originally and ended up being my kidneys. I had three biopsies all were easy as pie – the worst part of getting them was having the iv hooked up for the anesthesia. They were painless with no after effects of pain etc.
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  • Posted

    Thanks for that. That is what I thought. I am however now confused after speaking to the respiratory doc this morning who has told me that she thinks my problem is nothing more than a nasty infection & does not think I have WG. She wants to see me once more & is then done with me & will leave me with Reumatology & ENT? The Reumatologist wrote to ENT saying he suspected WG (henc putting me on prednisolone) & requested the bioposy but as said they did not take one due to no crusting. If I go back next week & they say the Sinusitus has cleared up is that because the anti-bis have worked & I did have an infection, or, I'm responding to the treatment for WG the Reumy has put me on???
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  • Posted

    I had several very sever sinus infections without crusting, I was coughing up blood and passing blood in my urine. After many tests broncoscopy CT scan and X-rays had a kidney biopsy which confirmed (what the chest consultant thought, it was )WGs.

    Ive had treatment for 9 months now and making a steady improvement. Hope all goes well. All the best.

    Fioa Bruce

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  • Posted

    Thanks for that Fiona. Things are slowing moving on. I was with the Reumy yesterday & he is more convinced than ever due to the continued weight loss (as well as the other bits) whilst on steriods & a rash that has come up on my left forearm over the weekend. He was frustrated with ENT for not doing the bioposy & now wants to get this sorted ASAP. It's the waiting of the concrete diagnosis that is frustrating me! At least if WG is diagnosed I know where I am.
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  • Posted

    Like you I lost nearly 2 stone in weight and got to the stage of not eating at all. I spent a month in hospital having so many tests but it was the Kidney biopsy and the Broncoscopy that finally diagnosed WG, I had eye trouble sinus, chest and kidney and had several rashes over the previous year but not much joint pain and no crusting, there seems to be quite a variation of symptoms, some more severe than others and can be easily mistaken or over looked.

    Good luck with the treatment, you will feel some benefit quite early on.

    Fiona

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  • Posted

    Back to ENT yesterday who have advised that there is still inflammation in the nasal passage & since I was there a couple of weeks ago, now crusting & it looks typical of WG. They have as a result booked me in for a biopsy next Thursday to conclude diagnosis :0(
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  • Posted

    Hope you have finally had a diagnosis and started treatment, I got nowere with ENT it was respiritory and renal that made my diagnosis, I was told 2 years before by ENT that I just had a sensative throat, Im sure if I had been diagnosed earlier I wouldnt have ended up with kidney and lung damage.

    Im recovering a bit more each month now.

    All the best Fiona Bruce

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