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Thread: New from the UK

  1. #11
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    Sam-- we all feel sorry for ourselves at times with this disease. It's a difficult one. JanW has a saddle nose and learned tons about it. She'll be a great resource for you. Just pick her brain, not her nose. *desperate attempt to cheer you up*

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    I am right there with you on the nose, Sam. It is rather jarring to look at my reflection now, as I have the saddle as well. Luckily for me I have very limited/almost non-existent sinus involvement, although I did have nosebleeds pre-dx.

    If it is any comfort, I did see people at the Vasculitis Foundation Symposium I went to with saddle nose deformities (although it is very rare, only about 15 percent of WGs have it and it only found in a few other conditions, leprosy and cocaine abuse being two, unfortunately) and it wasn't nearly as horrifying as I thought it would be, which made me think that others don't see mine as horrifying either (and I knew exactly what I was looking at versus someone else who might just say that's a weird nose). I've also seen pictures where people think they look like the Elephant man and it's not so bad. I was dreading having my passport photo done -- it just expired and they are good for 10 years, and, you know what, not so bad.

    I am fortunate in that I haven't been very sick at all, and right now my disease is well controlled on methotrexate alone. Jack is right; you need to be in the hands of an expert quickly; untreated WG is certainly an emergency situation.

  3. #13
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    Hi Sam
    another nose and sinus person to give you sympathy , if its not running im sneezzing and because of the whole in the septrum i tend to have a whistle if i breathe in to deeply i had two negative biopsy before getting a positve one
    Hang in here i did alot of moaning and got plenty of support many times stopped the tears
    they are a great bunch of people here
    best wishes DEEx

  4. #14
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    Thanks guys, feel comforted now. Much better.

    I just kinda feel alone y'know, my mum has arthritis so she's been on Methotrexate, funny to think i'll be on it too. And my family arnt good with sympathy. So i dont really talk to them about how i'm feeling. Cos what follows is either silence or a desperate attempt at sympathy that goes like this: "well at least you know what it is now", "it'll get treated now so dont worry" and my fave as donated by my friends, "at least you get a nose job on the NHS!"
    Which might sound great to them but i dont want a nose job at 25, and i basically have no chice about it, if i had WANTED one it would be different.

    Oh and Dee i'm so with ya on the whistle coming from your nose, how irratitating is that? Like a constant reminder of your condition.

    Just gotta wait for the specialist appointment which could be 18 weeks, tho i was on at my ENT consultant that i didnt care how far i had to go to see the best. But 18 weeks is 21 decemeber!! Happy Christmas!

  5. #15
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    I don't think you can afford to wait for 18 weeks. I don't want to alarm you, but I went from nose problems to renal failure in the space of 2 weeks (I now have a transplant). There are very few symptoms with renal failure other than a general state of being unwell so if you must wait that long, you need regular blood tests to check the trend of your createnine levels. Remind the consultant that this is a potentially fatal disease if not treated correctly and he should push your appointment forward.
    Jack

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    ok...slightly concerned now!! She assured me she would try to be quicker than that and if i didnt hear from her in a month to call her, so i definately will now

  7. #17
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    Like Jack said, it moves fast...so sneaky. The WG got my lungs even on prednisone and cyclosporine. That's when they had to add cellcept and eventually Bactrim. I am taking four medications to keep me in remission. I still have to check my urine weekly ...I have a dip stick. Sometimes I am not compliant or I just forget. I was reminded that I need to check it often.

  8. #18
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    Jack and Elephant are right. There's no way you can wait that long with Wegs.

  9. #19
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    Hi Sam, we are all here for you, my condition started in my sinus as well, i had severe crusting but I use nasal irigation every day, there is a nose oil spray as well and I use a papaw ointment to moisturize inside my nose as well..i figure we are all a rare breed and hopefully we can make
    you feel better.....

  10. #20
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    Deanne what are the names of the sprays you use??

    You wont all believe this but i got a phone call this morning i have an appointment with a chest consultant tomorrow followed by chest xray and ct scan...how quick is that!!

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