Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
My saddle nose developed BEFORE I was ever treated for Wegs, so I don't think it could have been from the pred. Although I did have some brief pred treatments pre Wegs dx. Also, it would be interesting to do a poll on how many people with sinus involvement got saddle nose eventually and how many haven't. I don't believe that everyone with such involvement will eventually get it. I think the saddle nose occurs because of extreme disease activity eating away at the septum, and that those who are getting continual, proper treatment and have brought the level of disease activity under control, may easily avoid getting a saddle nose. Of course, a later flare could then cause it to happen if not caught in time or if it doesn't respond to treatment.
Anne, dx'ed April 2011
Oh, I don't know. My dentist did tell me I have a high tolerance for pain. But I've read others on here who didn't even know they had a saddle nose until someone pointed it out, and I don't remember them mentioning a lot of pain beforehand. Everyone is different, and if you think that all the pain you had was in conjunction with your saddle nose developing, then it probably was. But it may not be the same for everyone.
Anne, dx'ed April 2011
Anne, I don't have saddle nose.
It's all of the insides that have collapsed to the point that there is basically no airway for me to breathe through one nostril, and the other nostril - very minimal due to crusting etc.........I am therefore, a mouth breather.
There are changes to the shape and size of my nose from the outside but it has not saddled. The bone is very strong (according to ENT) and will not collapse.
They say that they cannot (or will not) do any internal nose repairs until I am med free.
Keep Smiling
Michelle
Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS
Michelle, I'm glad you don't have the saddle, but am unhappy about all your internal nose problems and breathing issues. Although I have the saddle, I have no trouble breathing. So I feel very lucky in that respect. I hope you can become med free so the repair work can be done. I'd certainly think anyone's insurance would cover such a situation, though I know that might be less of an issue there than here.
Anne, dx'ed April 2011
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