Been having attacks of very dry lungs and then very wet infections, esp psuedomonas. Then, I had aspergillis (mold) in my lungs. Then I felt good and back came the psuedomonas infection.Going in circles. My pulmonologist is empathetic, but the rest of the doctors on my "team" shrug their shoulders and say, "Take care of yourself." Now I'm venting, I feel terrible from this and I can hardly get a few days change of venue. I have two short vacations coming up and I may not make it. Does anyone with lung disease from Sjogren's have it under control?
I’ve had some lung involvement, but nothing so extreme. I hope you can get on top of this soon.
Thank you for the articles. I did read it. This stuff is getting worse though. Really worse till I almost can't breathe sometimes.
I also truely appreciate your support. Since I had pnuemonia in May, my lungs have been affected nonstop with and infection of asthma attacks. This is the second time since may that I've had psuedomonas. And, I even had a mold a month ago, aspergilla.
Just venting.
On the up side I did get accepted into the pain management program. I have ataxia--sound familiar??
Tez_20 said:
Hello USAgurl,
I really feel for you where your lungs am concerned because besides the sjogrens and lupus they've caused me some trouble with my lungs, i have them swell, i've had pleurisy besides pneumonia several times and now i have COPD lung disease which is linked to ILD.
You may find this discussion helpful which i added a while back about the Lungs.
http://forum.sjogrenssyndromesupport.org/forum/topics/sjogren-s-syndr...
Love & kisses Terri :)
Pseudomonas: get it about once a year since 2009. Pneumonia came after a bronchoscopy. First time.
Ataxia: result of hip surgeried (5)?? Too much anesthesia?? Lupus?? Working with the pain clinic to figure it out.
My best Terri. You have to hold on.
Hi USAgurl. I do have lung disease r/t SS. I just went through three months of issues related to my lungs. Thankfully, I am doing better now. I do take Advair inhaler on a daily basis, but am trying to get off that. I am not a fan of steroids. Try and look at your environment and make certain there aren't any contributing factors to increase your risk of lung infections. I have started the coconut oil "pulling" that someone mentioned in another thread. That has helped significantly. I haven't had any issues since I started. I also make certain to use a sterile saline spray in my nose as often as I think about it.
I must confess I am somewhat nervous about the upcoming cold and flu season. Hopefully all will go well.
I genuinely hope this helps in some small way. I know what it is like to go through so many lung problems. You also might want to consider finding another pulmonologist...
Blessings to you!