I've had WG for 11 years, since age 32. I have set up a ...

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I've had WG for 11 years, since age 32. I have set up a local support group in Oxford, as part of the UK vasculitis group (previously The Stuart Strange Trust).

[i:b5950c78d8]This message was automatically imported from the original Patient Experience[/i:b5950c78d8]

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  • Posted

    How can I reach you to find out more about your support group and your experience.

    [i:95033289ea]This message was automatically imported from the original Patient Experience[/i:95033289ea]

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  • Posted

    :shock: [color=indigo:bfd92b180e][/color:bfd92b180e]

    I have just been diagnosed as having WG and was told that it is a rare condition - can anyone tell me how rare it is? How this is going to affect me? What are the side effects of the medication, when you get it? I am having tests to see how advanced it is and once the results are back I will then start to receive treatment. If anyone can help me prepare for this it would be very much appreciated.

    Thanks

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  • Posted

    [size=18:d856a09344][/size:d856a09344]Hi

    I had WG 20 years ago, I have been in remisson for 18 years!!! I had it in my nose and throht. [/b]

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  • Posted

    Dear Users of Patient Experiences re\" Wegeners Granulomatosis

    Probably not a very heartening experience to relate - but my mother died in 1970 and on her detah certifictae Wgegeners Garnulomatosis was stated as one of two causes of death ( The second cause was acute renal failue - unfortunately a condition known to be associated with WG)

    All seemingly very depressing for you WG sufferers - but - that was 1970 ( some 37 years ago) and, although WG is still, I understand. a pretty rare condition a in 1970 it was not understood ata all well bt the medical profession and was deemed incurable. I've been heartened by reading on several sparate sites that WG is now( relatively) easily managed: Several patient testaments on this site - to the effect they have been in remission for long periods of time - bodes well for me with my ( possibly over neurotic and very self obsessed) concern for my own well being as I approach my 53rd year on this planet ( My mother died after 5 years of hospitalisation with WG) in her 58th year

    Sorry I don't know that this account is really of any great interest/help to you WG sufferers

    Ciaran Harte

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  • Posted

    Hello,

    I have just studied about wegener's in my pathology course. I will let you know what I know. It sounds like you, who have been recently diagnosed, are quite worried. And I cannot imagine how you feel, because I am not in your position. But I hope you will find strength in yourself to cope with this obstacle. The good thing is that you have been diagnosed! It is very important that this disease be caught in time. From a medical student point of view: there is something going on in your body, where your immune cells (cells that fight off infection), are being told that one of your good cells has something wrong with it - when it doesn't. So, your body is fighting against these good cells...this causes an inflammation of the smallest blood vessels - arterioles, cappillaries, venules. WG has what is known as a triad - it affects 3 places, the respiratory system, and the blood vessels of that system, as well as the blood vessels of the kidney. Again, it is so good that this has been diagnosed! Untreated WG is just not a good prognosis. I was wondering, if you dont mind, what sort of symptoms do you have. I am not sure what treatment they give, but I will be learning about that soon. If there is anything else I could help, please let me know.

    God Bless.

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  • Posted

    [quote:5f10400447=\"S.\"]I've had WG for 11 years, since age 32. I have set up a local support group in Oxford, as part of the UK vasculitis group (previously The Stuart Strange Trust).

    [i:5f10400447]This message was automatically imported from the original Patient Experience[/i:5f10400447][/quote:5f10400447]

    how can anyone contact you,

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  • Posted

    Hi, ive just been diagnosed with WG after 4 months of coughing up blood, breathlessness, fatigue and undergoing a thorocotomy due to nodules on my left lung. I am quite worried and read things on the Net about life expectancy being only upto 5 years. Please offer some re-assuring advice??
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  • Posted

    Hi Dancingdiva smile

    I'm new to these message boards, so I don't know if you've posted anywhere else, but please, ignore most of what you read on the internet!

    In some bad cases, and without proper treatment, Wegeners can be dangerous, but with the proper treatment, it can usually be managed quite well. As with any illness, there will always be a small number of people who don't respond to treatment, but most of us get on ok smile

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  • Posted

    Although we have had TWO opinions of my Biopsy being WG, my ANCA tests are negative, urine samples and blood tests normal and Xray shows no signs of any new nodules. Therefore there is no reason to start treatment (yet). My rhumatologist suggests "sitting on the fence" - waiting and watching symptoms and scans. He is monitoring my condition monthly...

    I am emotionally accepting the uncertantity of my condition and learning to live with not knowing with what may / may not happen. It is teaching me to be more in the present and live my life to the fullest.

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  • Posted

    PS: I would be interested in volunteering to help raise awareness of WG and support patients suffering with it. If there are any opportunities please let me know. Best wishes, Nikki x
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  • Posted

    I was diagnosed with WG aged 64 in 2007 after two years of symptoms including ear infections, lesions on the lungs, scleritis, swollen and painful joints, sores inside my nose and a painful swelling on the bridge of my nose. Finally there was kidney malfunction. I had a seven week spell in hospital and went undiagnosed. Wegners was finally identified by an ophthalmologist who was investigating recurring scleritis. The diagnosis was confirmed six months later by biopsy.

    I was treated by chemotherapy (7 infusions) and then methotrexate and prednisolone. I felt ill and exhausted for many months after the treatment but eventually things improved sufficiently for me to return to work in 2009 aged 66! I am still working but have chosen to retire this summer although I intend to keep my hand in by doing management consultancy. The point of all this is - DO NOT DESPAIR YOU CAN RECOVER AND LEAD A NORMAL LIFE EVEN IF YOU GET A LITTLE TIRED SOMETIMES. I have had one minor relapse which was quickly resolved by a temporary increase in my medication

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  • Posted

    Hi Nikki smile

    I'm not medically trained in any way, but I would take it as a good sign that your doctor doesn't think you need to start treatment yet. The fact that they're also regularly monitoring you is also good. It means if anything changes, they'll be able to catch it early smile

    I don't know of any opportunities to raise awareness, but if you know of any websites or resources, feel free to send me the links, and I'll add them to my website:

    wegeners-uk.co.uk/

    Popo09: Glad to hear you were able to return to work. Enjoy your retirement smile

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  • Posted

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  • Posted

    Hi Alan. Thanks for approving my post smile

    Feel free to use my site, or link to it in any way you think would help. If you've got any suggestions on how to improve it, I'm always open to ideas smile

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  • Posted

    hi I live in cheshire and I've had wegener's [wg] since 1992 - officially since '94. Mine is "limited" wegener's - in my nose, sinuses, ears and throat. Knowledge, treatment and understanding are constantly improving and with treatment people thrive - I know of one lady in the USA who was diagnosed nearly 40 years ago. there are still web pages that are mis-informed with a short outlook on wg - ignore them!

    Vasculitis uk or vasculitis awareness are trusted sites .

    keep positive,

    regards,

    sandra b

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