possible wegeners

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I went to my rheumatologist yesterday and she threw me a curve ball.  I already have rheumatoid arthritis but she tested me for wegeners disease.  Would any of you care to share what led up to your diagnosis.   What were your symptoms and what results did they base their diagnosis on.  I have been on some drugs for RA and developed bad nose sores which apparently is a symptom of wegeners.  Thanks for any input.  Little frightened here

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  • Posted

    Hi I was first diagnosed about 12 yrs ago but that was about  2 yrs after I had first symptom. It started when I had a problem with my  eye  which usually showed up in older people, so started doing blood tests. They look for markers for other things before they make diagnosis, i.e scabs in nose-sinus-hearing problems,lungs,kidneys. I started getting bad sinus also hearing problems. They confirmed wegeners when I had a biopsy done at the time of having op on nose. I found the hospital were reluctant to label me with wegeners until they were 100per cent sure so I would not worry just yet. Taking medicine can do horrible things to you and that might be your prob with your nose. I would wait before thinking the worse.
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  • Posted

    Don't worry if you have wegeners it can be lived with, then again you might not have it so see how things go when I had my first symptoms they said it was Lupus turns out its wegeners but same meds so don't worry.
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  • Posted

    In my story 20 yrs and ok, I talk about my symptoms and the 4 month long journey I went through to be diagnosed before I reached my death bed. Thank god that didnt happen. I never developed sores (gramulomas) in my nose but eveyones symptoms are different.  Sinus problems are definitely a big problem though. Wegeners is rare but survivable which I have been in remission for a long time. Actually I feel that RA, lupus and fibromyalgia would definitely be harder because the worst part of having wegeners was the constant being in pain.

    iwish you the best of luck and will pray for you

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  • Posted

    Hey there I have been diagnosed with Wegeners and have been ill for 11 months now a biopsy was taken from my sinus in July after many trips backwards and forward to ENT and times being told "just a virus"they ordered blood tests and I had an operation to clear the sinus FESS I am now having treatment at hammersmith hospital in London on prednisolone and was on Azaproipine 100g but body is rejecting that so they have to change it back there in the morning see what they have for me. I am at the beginning of treatment and not feeling great but lots of people have said this is a hard part getting the right drugs for the condition. My Wegeners has damaged my hearing and I have now got my hearing aid which has made a difference.At present my Wegeners is ENT limited and no other systems involved which is good news. The nose sores play a big part of my illness and I very painful the steroids have helped and the operation helped with the facial pain . My results where based on boiopsy of the sinus and blood test for ANCA and I was positive for PR3 antibodies. Good luck hope you are ok. I am trying to stay positive and get on an even keel with my treatment. It is all a bit scary but you are not alonesmile
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