26yr old dancer been diagnosed with WG.

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I am still in shock, but write this less then 24hrs after being diagnosed with WG.

My GP and consultants knew a month ago, but i only found out yesterday after 4 months of thinking i had Lung Cancer and a thorocotomy.

I am not sure what to do/think, how i can plan my life now. I feel confused.

The consultant herself didn't know much about it, and i spoke to my GP this morning and even he doesnt know much about it. They need to research it. Meanwhile i've been referred to a reumatologist next week. What am i supposed to do between now and then!???

Continue reading articles on the net which say its life threatening and non-curable? The treatment is agressive and takes over your life.

Im only 26, am so active and a dancer by profession. Ive been through hell the last 4 months and thought yesterdays post-op follow up appointment was just routine. I honestly expected closure. I had no idea a new chapter would start...

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  • Posted

    Hi,

    Sorry to hear that you have been diagnosed with WG. I was diagnosed in May 2011 and like you researched information on the internet and became very concerned and depressed. But the more I learned I began to understand that whilst the disease can't be cured when the medics get it into remission life can go on pretty much as it did before. As you have found this site you will have read some "horror" stories but it seems to me that there are far more positive postings. You will have learned that the sooner the disease is diagnosed the better the prognosis and if you have been diagnosed within 4 months that is probably good. Your consultant will be looking to start treatment as soon as possible and that is likely to be a course of steriods and chemo. For me the chemo was a session each month for 6 months with the steriod dosage reducing over that period. It has to be said that during that period I did gain a little weight and was easily fatigued but I suffered no other side effects and I suppose in your profession that will be a worry. However at the end of the 6 months I am in remission and have very quickly regained energy and am losing the weight. Whilst I will be on medication for at least another 2 years and will have regular blood checks to monitor my condition my life has pretty much returned to normal.

    It was my hearing that was "attacked" with the disease beginning to progress toward my kidneys. For you it seems to have attacked your lungs and I suppose your treatment will depend very much on the damage which has been caused. I hope that you have been diagnosed early enough to have avoided any serioius permanent damage and that an early course of treatment will start a reversal process.

    I hope your consultation with your reumatologist goes well next week - make sure he moves quickly!

    Good luck - please let us know how you progress.

    regards

    Cliff

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  • Posted

    Hi Cliff,

    Thanks very much for your reply and re-assurance.

    Today I met with the reumatologist today at my local hospital, who seems very knowledgeable about Wegener’s Granulomatosis.

    He deals with many vasculitus conditions although he admits mine is a rare case, considering the ANCA tests came back negative twice.

    Thankfully as you mentioned WG is currently ONLY in my respiratory system (ears, nose, throat, sinus and lungs).

    I am going for an MRI scan later on this week.

    Then they will then start me on medication next week. A series of steroids (Prednisolone) and Methotrexate. I will need to see him once a month for at least 12 months.

    Hope everything is going well for you now health wise.

    Thanks again,

    Best wishes,

    Nikki

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  • Posted

    Hi Nikki,

    You sound as though you are over the initial shock - and it is shocking when you are diagnosed with something you have probably never previously heard of!! I am pleased that the disease seems to be localised and hasn't affected your lungs and hope it will stay like that. The steriods may increase your weight but hopefully your energy levels won't be affected too much and in your profession you can probably combat weight gain with increased exrecise. I have just started Methotrexate so can't comment too much about that other than to say thatI am told that my currently improved energy levels shouldn't reduce. Good luck and take some solace from the fact that what you have is probably far less devastating than the lung cancer you thought you had!

    cheers

    Cliff

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  • Posted

    Hi it is not the end of the world, far from it, just a "new reality" that's all.

    I can only repeat the very best pieces of advice I was given when I was diagnosed in 2009. mental attitude is everything and- very importantly- do NOT read anything about Wegener's which originates from the USA because you will find a lot of it to confusing, contradictory and just plain wrong. You would almost think it was a different condition they were discussing. If you do any research online it's important to make it specific to the UK. Keep well.

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