Finally decided to reach out...

[Jack]

I started tapering pred from 4mg in April and am currently down to 1 mg. I should be off it within 3 weeks.

Sounds like you are going to be the fittest person on the Forum!

[Sangye]

I've got a long way to go to win that prize! But I'm thrilled to finally be making progress~

[Brooke]

Well I am very happy that the second round seems to be kicking wegs butt! I hope you continue to make progress
I look forward to the day I can get off of pred!! Or at least below 5 mg, anything to help get the extra weight off.

[hrunci79]

Sangye,
I live in Texas but I fly to JHU to see Dr. Seo as well, and before that, Dr. Stone. Can you tell me who your ENT up there is? I now see Dr. Simpson in San Antonio, but am still trying to figure out why I cough so bad, so I would like to explore some options. I saw Dr. Flint at one point up there, but I think he has moved.

Thanks!

[elephant]

Hey hrunce79 don't mean to butt in, but does Dr Seo know that you are coughing? Are you still on Prednisone, or other meds to control WGs? Just curious.

[hrunci79]

Yes, elephant, he knows that I am still coughing. He gave me suggestions such as nasal rinses, reflux meds, etc, but none of them have worked. He has given me the names of some other ENTs to try, but so far, no one has been able to help me. I've tried asthma inhalers, been scoped by an ENT to see what was causing the coughing, and still they can't figure it out. We know it's not my lungs, and it definitely has to do with the fact that I have had so many surgeries (11) for my SS with the last surgery causing an unexpected reaction that caused a blockage of my airway nearly completely. I think that it is because that area is now SUPER sensitive and anything that passes through sets off a lot of coughing. I have tried Mucinex DM to dry up the mucus, which works a little, but not a lot. I think post nasal drip might be the culprit that is "tickling" my windpipe, but not sure how to clear it up.

I am on azathioprine (immuran) long term. Since I have relapsed severly 4 times with kidney involvement the last time, the docs decided that instead of taking me off meds every time after I get better, to just keep me on azathioprine long term to try to prevent relapses.

[Brooke]

Hi hrunci79, butting in too!!
I have had a lot of coughing in the past, still do but not near as bad. I too have SS but not very bad and I have not had any surgeries to correct it. So maybe the coughing is not totally just from your surgeries?
I do a sinus rinse twice a day.

[elephant]

I remember Brooke when you were coughing so much....I think that the medicine RtX stopped your coughing. What do you think?

[Brooke]

Hi Elephant~
Yes, something is sure helping because I do not cough like I used to! I have said before that I felt really good right before I started the infusions so it is kind of hard to tell yet. It has been 6 weeks but I just started to taper the pred. I feel I am coughing a smidge more but I can't tell if I have a sinus infection or not because I have been getting bright green stuff out when I do my sinus rinses. This has been going on for many weeks though. No fever or anything else along with it, just the green gunk with my sinus rinse.

[elephant]

That green stuff is infection, been there done that. If you rinse your nose three times a day for a few days and still get green stuff...it is definitely infection. Are you feeling a little congested? I did not have a fever either. My Rheumy and EnT agreed that it was an infection and it went away after taking two different antibiotics...
Can you get in to see your ENT?