Really need help.. difficult case.. can anyone help me please?

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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 organizing pneumonia which is daft as that has a non productive cough. I have seen dr Jayne at Addenbrooks and am currently under a rheumatologist at West Suffolk. They agree I have systemic symptoms but negative anca - just positive p anca. I cannot get below 40 mg of pred without joint pain, phlegm, rhinitis, conjunctivitis, dry eye, ocular mytosis and more. I cannot find any other disease that causes the phlegm and flue like symptoms it involves that is not bacterial which keeps leading me back to wegeners. Rheumy is calling it a steroid responsive illness. I feel they are missing something. Please if you have any thoughts let me know. 

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  • Posted

    Hi Sharon

    So sorry that you are going through the mill. It's really baffling - but if you are seeing David Jayne then I can tell you that no one in the UK knows more about GPA and Vasculitus than he does. I'm with him and on Retuximab infusions - they made me feel much better but lately they don't. Its a horrible disease. Keep on challenging them!!!

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  • Posted

    Hi Sharon

    I too had a lot of problems getting a diagnosis for this horrible disease taking 3  hospitals, 12 doctors and 81/2 years to get a difinitive diagnosis.  Keep battling on and you will get there.  I too had prednisolone for 41/2 years but no other treatment.  Am currently on lots of meds to stop the symptoms but I cannot get a quick appointment when I have a flare up which means that I do not get treatment when I need it.  I see David D'Cruz at st Thomas's who is excellent and was the doctor who diagnosed me.  All I can say is hang on in there.  I live in Northamptonshire so keep in touch please.

     

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  • Posted

    So sorry to hear all of your difficulties.  I was recently diagnosed in November 2016.

    I was told the only way to confirm a diagnosis of Wegeners is by a biopsy of either your lungs or your kidneys.  I had a kidney biopsy. I believe you can still have it and have a negative anca, but I'm not sure about that.  I hope things work out for you and you can get some relief!!  God bless!!

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  • Posted

    Hi, so sorry you are having such a hard time. The illness is bad enough. I was diagnosed in 2009 after being sick for a long time. I had a biopsy of my sinuses, which confirmed I had Wegener's. I see you live in the U.K. I live in the U.S. in Alabama. I still have sinus infections. I take a lot of mucus medication. I too have the joint pain. I'm sorry I cannot help you more. I hope you get to feeeling better.

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