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    If it were me, I would leave the eye thing alone....

    If it were me, I would leave the eye thing alone. I am not sure there will be anything to replace it with that is more relevant.

    I have some damage to my left eye from Wegener's, but it is not...
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    I am in remission, and I still get labs every 3...

    I am in remission, and I still get labs every 3 months along with a checkup at the rhumey.
  3. You are correct! I do love to hike! As it...

    You are correct! I do love to hike!

    As it applies to hiking, imagine having a 65 pound child sitting on your shoulders all the time. Not too much fun. When that weight is gone, you really start...
  4. I am not the same person! This disease has...

    I am not the same person!

    This disease has two options; fight, or die. At some point over the last two years, I chose to fight, not only this disease, but all of the challenges of life.

    "I...
  5. Two pictures, a year and a half apart...

    Don't let anything stop you. - Album on Imgur <--- click there to see the pictures.

    It is really amazing what time (and motivation) can do.

    I was not happy about some of the things from my last...
  6. Haha, I just noticed the timestamps on the posts...

    Haha, I just noticed the timestamps on the posts last night... makes it pretty easy to tell who is still on pred, you glorious bunch of insomniacs.



    At one point after my prednisone dosage...
  7. Not really. I am only doing labwork once every...

    Not really. I am only doing labwork once every three months now. I am pretty in tune with my body now, so if I feel something is not right, I will be letting the doctor know right away.
  8. Thank you all so much for your congratulations! ...

    Thank you all so much for your congratulations!



    Hi Anne!

    I am still going to Johns Hopkins, my doctors there are wonderful, and I recommend it without hesitation.

    Even though I am in...
  9. SpaceflightAddict Checking in: Two years with Wegener's.

    Good Afternoon Everyone!

    I apologize for my lack of updates the past year and a half.

    I know that I have missed some events on the board, but I have been checking in on everyone every once in a...
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    Mine does not look as bad now as it did when I...

    Mine does not look as bad now as it did when I was first diagnosed. Some of the prednisone chub ended up in my face and hides it a bit.
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    Hey vdub, sorry it took so long to get this for...

    Hey vdub, sorry it took so long to get this for you. Life kinda got busy.

    I got the picture from my doc, and it is not as good as I remember, but it does show a pretty clear saddle nose.
    ...
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    Hey vdub, I know my doc at Hopkins has a couple...

    Hey vdub, I know my doc at Hopkins has a couple of pictures of my nose that she used in a class. I will get in touch and see if I can get a copy to publish online.
  13. I have a pretty good idea what happened in your...

    I have a pretty good idea what happened in your case... a lot of medical professionals dictate their reports, then send them off to a transcription service to be typed up. Usually they are very...
  14. The weird extras can be soooooo much fun...

    The weird extras can be soooooo much fun sometimes though. Johns Hopkins is a teaching hospital, so there is always plenty of fresh meat to go around. A couple of times, my main ENT doc has asked...
  15. Follow up

    As a follow up to the previous report, I thought I should post this update.

    Johns Hopkins took a second look at my CT scan, and came up with a much different interpretation. It is amazing how...
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    I love the Arnold Palmers, the gas station down...

    I love the Arnold Palmers, the gas station down the street has big cans of Arizona brand for 99 cents. I usualy walk away with a couple of Arnold Palmers, and a couple of Green Tea with Ginseng and...
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    That is more what I wanted to say than what I...

    That is more what I wanted to say than what I initially posted... I know that I could have a beer every now and then, but I have not "felt" like having one. I am sure that everything would be fine...
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    I miss beer :(

    It has now been over a year since I have drank a beer, and I still miss it. I just want to get a bottle of Jack and get sloppy drunk one night, but I won't.

    If nothing else, in a year or two I...
  19. There was no single test that was conclusive in...

    There was no single test that was conclusive in my case. I had two inconclusive nasal biopsies and a negative ANCA test, so I did not make it easy on them. The doctors ended up testing me for...
  20. I had exactly that same set of symptoms when I...

    I had exactly that same set of symptoms when I was at Johns Hopkins around this time last year; negative ANCA, two inconclusive biopisies, and a long list of sinus problems. I was admitted at...
  21. I am pretty sure that I got the right report,...

    I am pretty sure that I got the right report, what I think happened is that whomever was "reading" the CT scan has never seen a Wegener's patient, and assumed that the only way for all those bits of...
  22. My CT scan report gave me a good chuckle today.

    My doc sent me for a CT scan, since I have not been feeling great, and some weird things came out of my nose recently. My insurance company decided that they would not pay for the place I had been...
  23. WBC, CRP, and Sed rate starting to climb after a few months on MTX

    Well, I knew this was coming. I have been feeling pretty crummy for the past month and a half, and my last bloodwork pretty much confirmed what I had been feeling. WBC went from 7.1 to 13.1, CRP...
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    I've experienced this almost every time my dosage...

    I've experienced this almost every time my dosage goes down. I went from 5mg to 4mg on Sunday, and right now I have a little bit of a headache going on. If it gets worse, does not go away, or...
  25. A prednisone tablet.

    A prednisone tablet.
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