Lessons Learned

[jola57]

Sangye, no easy answers here, you know what to do, listen to your body and keep trying to get to that happy place where pred and body agree. As much as you want to be off the pred clearly your body thinks otherwise. Too much bad, too little bad, so I hope you find your happy medium soon. Will think of you when visualizing feet in water/sand on beach. Thinking of you happy thoughts.

[Brooke]

I was supposed to start my 5 mg steroids this Monday, I started on Sunday instead. I can't do 5 mg, I was starting to cough at 10 mg. My doc here wants me to do 15mg one day and 10mg the next day for a month then do 10mg for a month then 5mg for a month. I don't want to go back up that high. I was hoping I could do 5 in the morning and then 2 1/2 at night and maybe 10 mg the next day. I put a call in to the Mayo doc to see what she says. Yesterday I did 5mg in the morning and 2/12 at night, I slept better but still had a cough attack. I am feeling better today than yesterday morning too. I wonder why my coughing is at night so much? Grrrrrrrrr

[elephant]

It is probably post nasal drip. Sleep a little upright and see if that works. Are you doing the sinus rinse? I do the sinus rinse a hour before bedtime.

[Brooke]

Thanks elephant, I will try to sleep upright and see how that goes. Yes, I do a neil med sinus rinse every morning and after work around 6 pm. Does that mean steroids help with post nasal drip? I didn't cough like that until I started lowering the steroids to 10 mg.

[jola57]

Brook be very careful, when I lowered fro 10 to 5.25 too quickly I sarted coughing then spitting up blood and ended up back on cyclo and 60 pred for a year. A much as you want to get off the pred believe me it is not worth it when you flare and you are right back where you started from or even worse. This time around I did from 10 mg on, by 1mg lower per month or more and now I am at 5 and feeling good. Good luck.

[elephant]

Brooke, I agree with Jolanta....I would ask to have your prednisone lowered very slow. My WG specialist at the Cleveland Clinic stated that people who have sinus ( resp involvement) have a really hard time getting to 5 mg of prednisone. I already had to bump my prednisone more than four times...the last time I had to bump it to 10 mg.
Brooke I remember you were doing well no coughing, at what point did you notice the coughing...how much prednisone where you taking?

[Brooke]

I will keep that in mind, I don't want to go back to 20mg everyday. I had always been at 20mg and then lowered to 15mg and did pretty good, it was when I was lowered to 10mg that I noticed the coughing at night. Maybe 12-14mg would work for me for a while.

[elephant]

When you start to taper 15 mg to 10 you usually go 12 1/2 milligrams first for two weeks or more...then go to ten. See if that 12-14 mg of prednisone margin would work and talk with your doctor about it.