Does anyone have lung (breathing) problems because of Sjogrens? If so, what is it specifically that the sjogrens does to the lungs to make the breathing difficult for you and what are you doing for it? I have read the research on Lymphocytic Interstitial Pneumonitis (LIP), etc. but I am not sure I understand how that translates into daily living and whether one can get better so I would love to hear from someone with personal experience. Thanks in advance for any and all input!
I do, I have bronchitis almost every year. Asthma, was told I had COPD before they discovered the Sjogren's. Recently my immunologist put my on prilosec twice a day for my cough and it helped. My esophagus is dry also. My understanding is the lungs can dry out as the any other organ from the destruction of our moisture glands. My throat is always dry but my salivary glands are fine. I also have other problems with my liver. So its a strange disease that affects everyone differently. If you can pull up a chart with the body and all the moisture glands you can see where they are and how they can affect other organs including the lungs. Drink lots of water, eat lots of vegetables and fruits. Good luck.
Gcb n pgh
Thank you for your reply. I know I have the dryness (in other organs and glands as well) so that is really helpful. I am also hoping to find more information on the type of autoimmune damage that can be found with secondary Sjogrens (i.e. the infiltration of the white blood cells, deposits, scarring, pulmonary hypertension even, etc.). Anyone??
This past winter when I was so ill with my lungs they did a lung scan and they found multiple bilateral nodules on both lungs. I have had 2 pulmonary doctors and they gave me advair, sweet aren't they, I see my 3rd next month. There is nothing you can really do for the nodules except watch to see if they grow. They could be from previous infections or viruses or the word no one wants to say.
Every 6 months I have to go for a lung scan to see if they have grown, if after 2-3 years they stay the same size, I don't have to worry......that is about it.....I do think its just from all the infections. I do dread winter and flu season.....I do know now to get a flu and pneumonia shot so I would recommend you do the same.....
Secondary Sjogren's usually comes with another autoimmune disease...if you again type in secondary sjogren's, lots of websites will come up, just be careful which ones you take advice from on line.....I have Primary which means they have no idea what caused mine.
Autoimmune still is such an enigma to them......they have no real answers.....maybe they will in a few years, same with the liver, I don't have much help with it, I have cirrhosis and I feel like there is no help. Again, I am getting a second opinion next month, but reading on line it is very disappointing.
I also have enlarged lymph nodes under my left arm that I found not the doctors so I get to have an ultra sound too. I have read that you can have that though and it doesn't mean lymphoma, keep in touch. It is definitely a test for how tough you can be emotionally and mentally.
gcb in pgh
Yes! Speaking of lung problems, my asthma symptoms have gotten much worse and occur more often. I am on 3 different inhalers and
Singular. I went from having asthma problems once every 5 years to having them every few months. Also, I get frequent bronchitis. If you have asthma and muscle pain you might want to ask your doctor about a rare autoimmune condition called Churgs-Strauss syndrome. It is a form of vasculitis that is treatable.
I was diagnosed with Sjogrens in 1998. I collapsed at work in 2004 with percardial effusion (liquid around my heart). Doctors at the time think it was caused by a viral infection. Anyway, since that time, I have had trouble breathing, SOB, coughing, etc. I have tried everything. This summer I went on a trek to figure out what was wrong and I went to every doctor I could think to try. After a CT scan of my lungs, and a bronchoscopy, I have been diagnosed with pulmonary mybobacterium avium complex. I am now on the infamous 3 antibiotic cocktail for 18 months and hoping I see some relief. I found this website through the message board for MAC. I would not claim to be an expert but I do agree that the lung nodules ( I have) should be treated and a wait and see attitude would prompt me to seek a second opinion.
I also have pericardial effusion. Is that common with Sjogrens? My illness (sjogrens and myasthenia gravis) started about 2 1/2 years ago from mold poisoning so I honestly thought it was the mold that caused the pericardial effusion. That being said, everything I read and all the doctors I have spoken to have stated that pericardial effusions usually reabsorb. Mine has not and they don't know why (and don't seem to care quite honestly). Does anyone have any insight for me on this?
xrower, is yours reabsorbing now that you are taking antibiotics? How dangerous is it? It must be dangerous if you collapsed, but now that you know about it, is it still dangerous? I would love your insight. Thanks everyone!
I have not reabsorbed, the only residual effect is that the lining around my heart is thicker and in 10-15 years may need to be scraped. I still have to go annually to get checked but so far so good. This summer on my trek of answers to my health, I thought my heart may be causing my problems. I was very happy to learn it wasn't but very surprised to learn it was my lungs. I have asked every doctor I have seen if they thought there was a link between sjogrens and pericardial effusion. Only my primary doctor in Columbus, Ohio (have since moved) believed it was linked. All the others look at me like I have lost my mind.
My gut tells me all this is related somehow, but not sure if I will ever have this confirmed at least in my lifetime.
Today was a good day ... hope you had the same!
There is a book that comes up in search results for "sjogren's pericardial effusion" called The New Sjogren's Syndrome, by Daniel J. Wallace, Evelyn J. Bromet, from the Sjogren's Syndrome Foundation which has a chapter about internal organs and their involvement in Sjogren's, and it absolutely states that this is a known complication. I highly suggest googling for this book and reading beginning with page 68/chapter 10.