Originally Posted by
Sangye
Man, I'm just not doing well at all. I seem to be over the cold but I have a bad dry cough. I can't take a deep breath without coughing. And I hurt everywhere-- literally every joint is sore. Still really weak, too. I emailed Dr Seo yesterday but didn't hear back. (I made sure his receptionist passed the email to him) I did monthly labs at JHU today so maybe by next week we'll know what's going on. I feel exactly like I did when my last flare was cranking up.
I'm feeling pretty down about all this. I got dx'ed in June 2006 and except for 2 two-week periods, I have never had a time where I felt okay. Last year I finally got into remission but within a week had the acute hearing loss/ vertigo thing and had to go back on high dose steroids. It should've only been 2 weeks but it turned into months. It messed me up so badly and now I can't get below 3mg pred. In November I felt like I was stabilizing a bit from all that, then the Wegs symptoms started cranking up. Then the cold from hell, and it's gone downhill from there. And if it is Wegs making me feel awful right now, we'll re-treat with rtx which makes me feel even worse for 6 weeks. Something to look forward to.... I'm feeling hopeless about ever getting out of this stupid hole. :sad: