There was a 'Lungs for Life' information day in our town today. I had some leave from work, so thought I would tootle along as I wanted to ask someone knowledgeable about the difference between fibrosis and bronchiectasis, and if the results could be confused on a ct scan. The reason I asked was because I was diagnosed with bronchiectasis and asthma about 5 years ago, but often also have a very dry hacking cough, that's not productive.
It was a really good exhibition, and I had the opportunity to speak with a respiratory consultant. He said that, in his experience, fibrosis with Sjogren's is uncommon but that, as fibrosis is scar tissue, it can in fact cause the bronchiectasis. I then had an opportunity to have some lung function tests, and came out really well. This was really good, because I have had two antibiotics recently for chest infections, so it was re-assurring to know that my lungs are clear for now.
Anyway, I just tought I would share this information.
Kathyx
Kathy, Sounds like this was a good day. I guess I would tend to disagree with the guy about the fibrosis though. I would think that fibrosis is much more common than people think---including doctors. I don't think that most doctors are well enough informed about lungs to realize how destructive sjogrens can be to the lungs.
When a person has such thick mucus in eyes, nose, mouth, etc it also extends on into the lungs and GI tract not to mention the liver, pancreas and gallbladder. Any gland in the body that secretes is affected by the sjogrens. Our lungs have so many different sized bronchial tubes and the thick mucus sits there and literally causes plugs of mucus. They can be large or small and when they are there they initiate a cough which is out bodies way of clearing out the mucus in our airways.
This mucus that sits theree for longer periods of time than usual frequently becomes infected. When infections start in the lungs they tend to becomes chronic because the bacteria is way down deep in a warm, moist environment where they just love to sit and incubate. We can think we are over an infection only to have it return several weeks or months later. It depends on how active we are and how good our body is at protecting us against infection. Plus any stressor that comes along can kick start those old infections that lie around in our bodies waiting to make themselves known.This in turn causes the irritation and scarring of those broncial tubes.
Have you noticed that pretty much all sjogrens patients at one time or another are put on the albuterol and steroid inhalers. This is to reduce the swelling in the airways and increase the size of the bronchial tubes so that we can expectorate those secretions which helps us to breath better plus helps decrease infections in the lungs or at least cause them to be less severe.
So manay of us have also been diagnosed with asthma and I think this is because asthma is considered an autoimmune disease and our airways become so irritable from the whole autoimmune onslaught. I know that in the last several years I have developed a harsh cough when I cough from way down deep and it is really hard getting those mucus plugs up.
Also, even though we have activity limitations much of the time we really need to get some exercise that makes us expand our airways. I have also found that wearing a face mask when outside in the dry/dusty air really helps to trap the moisture that I rebreathe. After I have gotten exercise and worn a mask I am able to cough up secretions more easity. Just a little info from the old lady's side of the room. :P Irish ;D
Hi Irish
Thank you - I very much appreciate information from the 'lady across the room'. I know that when I have 'something stuck' using my salbutamol helps to shift it. The asthma nurse used to poopoo that, but I know it's true.
I'm just thankful that I have had a good run with my lungs recently. Four or five years ago, it was a nightmare. Having said that, for various infections over the past couple of months, I've had 5 antibiotics: 3 keflex, trimethoprim and amoxyl, so that could be why my chest is 'good' just now.
Perhaps that respiratory specialist wasn't as good as I thought? Having said that, I don't know who the good ones are within the NHS in our area. My chest problems were diagnosed by an immunologist and an ENT consultant. Whatever, the treatment (tiotropium and Serevent) seems to be working, so that's all I can ask for.
All the best to you Irish.
Kathyx
Kathy, I don't think that being "good" has anything to do with what the therapist said. I have found that an amazing number of doctors that I have seen have absolutely no clue that lungs are involved with sjogrens. They have never been taught about the sjogrens-lung connection and they haven't spent any time at all thinking about the issue. It is reight in there with the stomach, gallbladder, liver issues that a lot of docs don't associate with sjogrens til they get abnormal blood tests.
I have had the strangest looks from docs when I mention my lungs. Also, I just read something on google last week about "The Lung in Inflammatory Bowel Disease". This was a new aspect for me as I have never heard of this. I can't remember who, where, etc except that is the title of the article and it was written by a Colby. Who knows why I remember that except it is my favorite cheese. Hope you can find it. Also I think it made a remark about Celiac disease and the lungs also. None of us with AI are safe are we!!!!!
Thanks for all the time you put into this site. It is good to have people who care. Irish ;D
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 at https://sjogrensworld.org/index.php?topic=12169.0 also describing your lung symptoms which includes diagnosis, symptoms and treatment. Please fill it out, so we can all share it with doctors.
Irish, I completely agree about clueless doctors. When I told my GP that I'd had pleurisy (before my SJS diagnosis; I'd gone to the walk-in clinic for it rather than waiting for an appointment), he didn't believe me and told me it must have been something else. Then, at my first visit, my rheum asked if I'd ever had pleurisy. I knew I had the right doctor when I said yes, and he replied, "Yeah, that's often a part of Sjogren's."