Anyone else's lungs affected?

[drummergrrl]

Hey everyone, I just came across this website and am elated to talk to anyone who might know what I'm going through!  I was just wondering if anyone else has ever experienced any lung issues as a result of Sjogren's.  About a year ago I had an operation and a week later I had trouble breathing.  I went to a ton of doctors and it was chalked up to me having pneumonia, but after about four months it didn't go away and my breathing was pretty frightening; it was to the point where I couldn't speak in complete sentences, couldn't yawn or sneeze without excruciating pain and I went for four months without being able take a deep breath.  Needless to say it was quite an ordeal.  After going to a pulmonologist and having a lip biopsy performed, I was told that I had Sjogren's and that the disease had caused my lungs to scar.  Now I'm on O2 24 hours a day and completely disabled for the time being.  Has anything remotely similar to this happened to anyone else?  And if so, what concoction of medication worked best and how long did it take for things to return to somewhat normality?  During my last hospitalization I was placed on a lung transplant list due to the amount of scarring and I was told that I can no longer work, but I completely refuse to accept that! I just turned 24 a week ago, I absolutely do NOT want to live off of Social Security or Disability! Thanks everyone! 

[DragonflyC]

Did your doctors mention pleurisy to you?  I had a similar issue, though with fewer long-term repercussions than you seem to be facing, a few years ago.  It was the first sign that something was seriously wrong with me, though no one mentioned that possibility to me.  I had pleurisy for months, then a bout of pneumonia, then pleurisy again.  I've never felt so much pain.  I couldn't breathe, move, walk, or speak without it hurting.  It's more common with lupus, but it's associated w/ SJS, too.

It took a few years, but my lungs are more or less back in working order.  For me, it was getting my thyroid treated that first made a big difference. Then, just learning to take it easy (easier, I guess). 

[drummergrrl]

I had two lung biopsies and my pulmonologist came back with a diagnosis of pulmonary fibrosis caused by Sjogren's.  He then prescribed me Imuran and Pred and the O2.  I've got an appointment with him in a couple of days, I'll ask him about that.

[irish]

drummergirl, sure sounds like your pulmonologist has a very good grasp of the affects of sjogrens. He has done all the right things as far as I know. He should be commended for getting you started on Imuran so soon. Also, I am guessing that you are on prednisone or maybe will be considered for prednisone now that the infection is gone.

I am affected in my lungs but not like your case. I have low t-cells and am high risk for mycobacterium infections and other weird stuff that is hard to treat. I have 3 inhalers plus a nebulizer and I also had "The Vest" precribed for me. Ask your doc about this. It is a pulmonary airway clearance device that I use twice a day when I do my nebulizer. It really helps me, My lungs are so dry and my mucus is so darn thck--what little there is of it. This device helps keep the mucus plugs from staying in the airway. It shakes things up and helps me cough and clear them out. I also have myasthenia gravis and am prone to muscle weakness which makes it harder to cough up and clear my airways. Since I started on the nebs with the Vest I have had much less bronchial infection. Now if I could just get rid of the sinus infections.

Hopefully you can hang in there and be patient as the Imuran takes a while to kick in. Have you considered moving home with your folks or with someone so that you can either work part time or take off work till you get this under control. Don't be afraid to apply for disability if you are that ill and having so much trouble breathing. It does take a while to get approved. Make sure that you document your health issues and keep good trackl of your medical care in case you do decide to apply for disability. If you would get it you can always work a little while on it. Hope things go well for you. Irish

[c991]

During my last hospitalization I was placed on a lung transplant list due to the amount of scarring and I was told that I can no longer work, but I completely refuse to accept that! I just turned 24 a week ago, I absolutely do NOT want to live off of Social Security or Disability! Thanks everyone! 

My word, I don't no how you do it. I have lung problems, but not nearly as severe as yours and they are no fun. Like others posted I have had pleurisy and pneumonia, mine bad enough i could hear the rubbing and rattling. My pulmonologist isn't to bright she doesn't think my problems are related to sjogrens's. Says its my smoking, I smoked at most 6 packs of cigarettes in my late teens because i wanted to look cool, that was over 30 years ago. I would seek a second opinion, but i plan on having an open lung biopsy later this summer and expect that to settle things.

In my case, I have cysts and ground glass attenuation gga (active inflammation) shown by ct scan. My pulmo didn't tell me about the gga, I later read it on the radiologists report that my primary doc showed me. She also didn't notice the scaring visible on a chest x-ray 4 months ago, but not present 2 years ago. I would be steamed, but my rhuem added imuran to the drug cocktail i'm taking and it is the right choice for treating sjogren's related lung disease. Sounds like you have a good pulmo and are taking the right meds, do you have rhuem yet?

[inga]

I have nothing as severe as yours.  I have fine reticular changes and ground glass oppacities.  Mine was mild back a few years ago, it could have progressed in the last few years, since I am SOB a lot.

[Pisces24]

I have spots on my lungs that show up on a CT scan. I had a CT and then another 6 mos later. Some spots disappeared, some got smaller, one got bigger and I got one new one. I had the pulmonologist puzzled so he had me do a broncoscopy March this yr - which wasn't as bad a procedure as I thought it would be.        Well it came back negative for any cancer, fungus or infection.  Thing is doctor doesn't seem to know what it is  and he is telling me it is Sjogren related. (I see my immunologist next week so I will ask him too.) Thankfully I have no breathing problems etc. but my blood oxygen was a bit low. He suggested a program of aerobotic exercise as I sit all day at my job.

As to the future, I am going to get monitored for that now too. Sigh!  Thankfully they are not talking lung biopsy if things get worse - just a 6-8 mo course of prednisone.
It is scarey to hear about your lung problems as NONE of us know where SJS is going to show up next in our bodies or what it is going to do next. Sorry to hear it is affecting you this way. 

[lookingup]

Here are some very detailed articles discussing Sjogren's and Lungs.  I have scoured around and have found these to be very good articles:

Pulmonary Manifestations of Primary Sj?gren?s Syndrome
http://medind.nic.in/iae/t09/i2/iaet09i2p93.pdf

Lung involvement in primary Sj?gren?s syndrome is mainly related to the small airway disease
http://ukpmc.ac.uk/classic/picrender.cgi?artid=896354&blobtype=pdf

There are many more out there.  Definitely also buy "The New Sjogren's Syndrome Handbook".

I'm going to have a separate post also describing your lung symptoms which includes diagnosis, symptoms and treatment.  Please fill it out, so we can all share it with doctors.