Hi everyone! I hope you're having a wonderful weekend.

I'm in the process of getting another rheumatologist because my current one who I've gone to since September 2021 doesn't communicate well with me. I have several questions that I'm planning on asking the new one at the end of the month (long wait times to see anyone!) but I'm wondering if any of you can provide me some information on the main questions that my husband and I have.

1) How quickly can GPA turn into "life-threatening"? Are there warning signs? My doctor made it seem like it happens fast and you cough up blood and can't breathe and have to go to ER! That's a bit scary if that's true but since I'm still not in remission after all this time--somewhere b/w 10-14 months we think--I'd like to prepare!

2) I seem to have lost my taste for some food/drinks since the Rituxan--does that ever come back?

3) I've been slowly losing weight for about 1 year now (I went from 98 lbs to 90ish now). I've told all my doctors, especially my rheumatologist, and though they say it isn't good only my GI is really concerned and trying to help. With GPA does your weight just keep slowly dropping until you are in remission? I already look like Peter Pan's sister LOL! Seriously, my BMI is ~16 and I make myself eat even when I'm not hungry or feeling well.

4) I currently take Nasonex, Azelastine spray, Claritin D, and Montelukast daily just so I can breathe and I still have to blow my nose several times daily to try and get those "things" out of my nose before they get bigger. Is there anything else I should try?

5) Ever since I hit menopause at 49 (I'll be 53 in October) I've had insomnia. I've tried everything from natural supplements (ie melatonin) to benadryl to ambien to ambien er to sonata and my body just adapts to the pills over time and makes them less effective. I ever did a sleep clinic and CBT and was finally able to sleep 7 hours without any pills until my 2nd moderna vaccine triggered frozen shoulder and, apparently, GPA. Now my rheumatologist has me on 1-2mg lorazepam per night and that is the only way I sleep now (5-7 hours). Is GPA making sleep worse for you also?

6) Finally, sorry if this sounds grim, does anyone know how life expectancy is affected regarding active GPA? Since I'm still not in remission I'm just curious! I am totally fine with whatever happens and am grateful I've lived this long anyway so the answer really won't make me sad...it is really because I hate not knowing and it took a team of doctors months of testing and cutting a chunk of my lung out to finally diagnose me. I'd just rather be prepared than have no clue.

I apologize for such a lengthy message and hope it is ok asking these things! I'm sorry if I triggered anyone inadvertently, too--I'm just so clueless on so many levels and I don't want Google to be my answers until I can see the new doctor LOL!

Any info would be greatly appreciated!!!
Arlene