Man, this is all scary stuff. I had a lot of breathing problems and coughing, which I thought were pneumonia, for a month or so before dx. Breathing problems continued for quite awhile after dx.... for me it was less of a rubber band feeling and more like fairly severe asthma. I had inhalers which helped some but not a lot. I used a nebulizer in the hospital but have never had one at home. It sounds like a good idea for you, for sure. My breathing problems could be relieved by coughing something up, but that could take hours. It probably took a couple years for me to get a lot better with the coughing and breathing issues. It may have been from the lungs at first, but ultimately I'm sure it was stuff dripping down from my sinuses and collecting in my bronchial tubes until it could be coughed up. It is so much better now, though it still happens.

I think if I were you, I would not bother going to the Kaiser advice nurse unless there was nowhere else to turn. You could of course go to the emergency room if things get really bad. You don't want to die of asphyxiation. But I would get with the great new rheumy that you have and get her recommendation for a really good pulmonologist, preferably one with Wegs experience. Kaiser could be a problem if that is the main place you can be seen. I guess I'd consider changing insurance, if you keep running into such duds of doctors there. I know none of it is easy. If your work gives you Kaiser, I guess you don't have a lot of choice. I hate to hear of "the system" making it so hard for people to get the expert care that they need. Is your great new rheumy with Kaiser, or did you manage to get her some other way?