Lupus Support Group

Sorry I've never had problems with my lungs, it seems my lupus thinks my kidneys are more interesting! Hope you are doing well and sorry I don't have any experience to share with you.

Yes, I have Lupus Lungs...as they refer to them. I have a pretty chronic cough and I'm bothered with a lot of inflamation. I'm on Imuran to try and control it. I take many other drugs for other things. I also have a Nebulizer I use when I become congested and it is hard for me to breath. I avoid people with colds like the plague, because I immediately get pnumonia. I generally try to stay out of the geral population in the winter, to try and stay healthy.

Hello Kylie5723, Thanks for your reply. Lupus also did affect my Kidney first and now it is my Lung but I am still fighting the good fight.

Thanks Meekcat, I am trying to work with the doctors to see what is available for treatment. I did hear of the Immuran as well and Cell cept. I will see which one they decide to put me on.

Yes, I got Pluerisy for 2 months from LUPUS, inflammation of the lining of my lungs, it was horrific and painful and i was undiagnosed. That's the worst LUPUS experience i've had.

I was in hospital, Intensive Care,on a respirator for a week, then 2 weeks on a ward with pneomonia. I was asked if I had OPLD. Obstructive Pulmonary Lung Disease, I said no. I did smoke however. Long story short, I quit smoking and take Pulmonary Fuction tests every so often. They want to make sure the Lupus is not the culprit. I truely believe my lupus is attacking my joints mostly......anywhooooo......take care!

Kylie5723, the lupus has found my lungs interesting even before everyone else knew that I had lupus. I have had lung issues for 12 years. They now think I have asthma. I think they are full of it (I believe it is from the lupus). I have never smoked and 12 years ago they told me that I have the lungs of a smoker. Nobody believes me when I say I don't smoke. Anyway, to make a long story short (too late) I now take Advair (500/50) it is the highest dose. It has a steroid in it, like the Veramyst I take. I also take Singulair, I have a rescue inhaler if needed, Prednisone also helps my lungs, Zyrtec. The Zyrtec is for allergies. I hope this helps.

I was diagnosed with asthma after I was diagnosed with SLE. I've always wondered if the problems I have with my lungs is actually from the lupus. Now that I am having a flair, it would seem so.

This is interesting...I supposedly developed asthma during my 2nd pregnancy...and it has progressively gotten worse, and so have my allergies. Never even thought of relating it to Lupud till just now. I've also had Pleurisy several times within the past couple of years...confirmed by X-rays, however, now that I look back in history, I've actually had Pluerisy many more times than that.

I used to get it when I was in my 20's & 30's also, but PCP's would just tell me I probably just pulled a muscle..."doing what???" I'd ask. Never could figure it out...but man...does it hurt like the dickens!!! Can't breathe, sneeze,, cough, move, etc...Can't compare anything else to that pain...except maybe when I had my total hysterectomy...OR KIDS!! LOL!! ;)
~Tonya

I was diagnosed with lupus back in 2007, but have been suffering with the pain since 2004. Was doing fine up until October of 2008 when I developed a bad case of Shingles. Had them for over a month and when I finally felt ok (not great, just OK), I developed this massive pain in my left side. Kept telling my doctor that I thought it was Pluerisy to which I just got the brush off. The pain kept moving all over my left side, neck, shoulder, back, and stomach. It was so bad that I was crying every night...and taking vicodin every night. I went to the hospital and had a CT scan done, come to find out my spleen was enlarged. Well by this time, (December), I was having breathing problems. Gasping for air and getting winded just walking to my mailbox!!! I went to a pulmonary doctor and had Pulmonary Function Tests done...discoverd that I now have asthma. I was then put on Advair and Singular. I had gone back to my doctor's a few more times until I finally made an appt. with a lupus specialist, only to be told that NOW I need a lung biopsy because there is a ton of scarring on my lungs! Was never told I had scarring of the lungs...I have not had the biopsy yet because it's taken this long to get in with a surgeon (should have just opted to have it done at the hospital where the specialist is at, but that is 2 hours away!). Anyway, because of all the breathing problems, I have constant pain from TRYING to breath. Can not sneeze, yawn or cough for fear I will just keel over from the pain it creates. I will say this though, you never realize how much you take breathing for granted until you can't do it without feeling like someone is standing on either side of you shoving steak knives into your lungs. If you couldn't tell, I am scared to death to have this biopsy done...I think I am more afraid of what the outcome will be. So I hope you are able to get your lung problems under control, Joy because I am having a heck of a time getting mine under control...been 7 months now =(.

Stacey