Does anyone on the forum have Sjogren's and Interstitial Lung Disease?
Here is my concern:
I just got over a bad Pneumonia. Came out of nowhere and knocked me flat on my back. I had 12 days of Levaquin. They originally gave me 6 days of Levaquin but I was no better at 4 days and told them I did not think 6 days was going to do it so my PCP increased it to 12 days.
I had an initial Chest X-Ray which showed the Pneumonia in the right middle lobe. Then I had a follow-up Chest X-ray 2.5 weeks later which showed a 1 cm nodule.
So my PCP ordered a CT scan. I had the CT scan today. They literally took 2 shots, one without contrast and one with contrast. That CT scan showed a 3 mm nodule and it also showed scarring in the right upper lobe and the left lower lobe. My PCP said they will do a follow-up CT in a year to see if the nodule grows. Then she said that the scarring may have been there a long time so there was no reason to be concerned about it.
Well, I am concerned. Scarring does not belong in the lung. Just because they don't know how long it has been there does not mean there is no concern. It may have been there awhile but it may not have been there awhile. No matter how long it has been there, I would think that it is important to find out what it is, especially since I have Sjogren's. I have had Sjogren's for a long time (just not diagnosed until last year). I have shortness of breath on exertion and a dry cough.
I did some reading on line and Interstitial Pulmonary Disease often shows up as scar tissue on a CT scan. I am seeing my Rheumatologist on July 17th and I will be bringing the Chest X-ray reports, the CT scan reports, and CDs of the Chest X-rays and the CT scan to show her. I am sure she will be interested in finding out why I have scarring in two places, some in the right upper lung and some in the left lower lung.
My question is, has anyone had Interstitial Pulmonary Disease associated with their Sjogren's and do you know how it appeared on your CT scan?
Jaspar I have some lung scarring that shows up on tests, and has since I was a child.
I had scarring by age 10. And I'm 72 and I've never had pneumonia in my life.
I don't think it's any worse, but I'm supposed to have a CT scan to monitor it every year or 18 months, tho' I'm not sure anyone remembers that now!
It doesn't worry me, There isn't anything to do but take care of yourself, and monitor carefully your health, especially related to your lungs.
Hugs, Elaine
Thanks, Elaine.
I don't think the scarring is from the Pneumonia. The Pneumonia was on the right. The scarring is on both the right and the left. Plus, I just got over the Pneumonia so it would not have time to form scar tissue.
I think my concern is their total lack of concern for how long it has been there or what it is from. They are not even interested in finding out what it is or if it is related to Sjogren's. That concerns me. If it is nothing, fine, but they don't know that because they are not even investigating. If it is Interstitial Pulmonary Disease, it needs to be treated in a timely manner to prevent it from progressing.
I would be happy if it was nothing, but I don't know that if they are not going to investigate and find out what it is.
Hi Jasper - I do not want to mislead you by any means, I would be concerned too and you certainly should follow-up, however, my sister had scarring on her lungs and was told it was from either bad bouts of bronchitis or pneumonia she had had earlier in life...did you by chance have bronchitis or pneumonia earlier in life?
Yes ILD is present in sjogrens sometimes and certainly needs to be followed so I do think your concern and follow-up is the right thing to do, but I would not worry myself intensely about it until you speak with either your PCP or your rheumatologist. I do not have lung disease at present from sjogrens but I was told you should see a pulmonologist for additional testing if you start having lung or breathing issues. I would ask to see a pulmonologist for further testing to set your mind at ease or find out exactly what is going on and start treatment if necessary.
Please keep us posted. Sending positive thoughts your way.
Finallyadx ..... thanks for responding.
No, I never had bronchitis or pneumonia until this month. I know scarring cannot occur that quickly.
I know that the scarring may be nothing, or mean nothing. However, my concern is that my PCP is not concerned at all even though she has not asked me my history of previous lung infections, has not asked me if I have any respiratory symptoms (such as shortness of breath, which I do have), has no idea how long the scarring has been there, or what it is. I don't think she knows a thing about Sjogren's (although I have told her I have it).
My other concern is that the doctors in this area are the same doctors who have consistently ignored all of my symptoms of everything I have had. There seems to be a climate of dismissal around here and a climate of do nothing/ignore it. I have told these doctors about my symptoms every visit for 10 years and they just do not investigate. I had to push hard, for years, to get them to test my liver enzymes (which had been elevated in the 1990s). Finally in 2009 they did. They were elevated but they did no follow-up. 2 years later and 3 sets of elevated liver enzymes later, they finally ran a Hepatitis C test. It was positive. So I was finally treated but had to switch doctors in the middle of treatment because the doctors here had no clue what they were doing.
The doctors down here also ignored all of my symptoms and concerns about an Autoimmune Disease as well as my bladder symptoms. They said I needed no testing or investigation for AI Disease. I pursued the Rheumatologist on my own last year. She diagnosed me within a month with Sjogren's. So you see, I don't trust these doctors down here. I don't think they know what they are doing. So when they say there is no concern about the lung scarring, why would I believe them.
I am a registered nurse. I worked in critical care for over 20 years, then ER for 4 years, and then I spent 14 years doing physical assessments in a clinic setting. I know you cannot just say nothing is wrong without at least investigating and finding out what the problem is and if it is serious or if it is nothing.
I will be seeing my Rheumatologist soon and she will probably refer me to a Pulmonologist. She is very good about referring as necessary. I will be delighted if I do not have Interstitial Pulmonary Disease. Frankly, I am getting a bit tired of getting new diagnoses. It would be refreshing to hear that this is not anything to be concerned about. I just want to hear that from someone I trust and from someone who investigates a little bit as opposed to just dismissing it (and me) without an investigation.
Thanks again.
Make sure the pulmonologist understands interstitial lung disease. And search this site for the topic; it is something that some people have been struggling with it.
I hope your tests show no problem there!
Sharon
Hi there,
i have lungs full of cysts and after a few years and a few doctors, we are now of the opinion that I have a cystic lung condition associated with Sjogrens. There isn't a dr keen enough to actually "name" what I have, other than that. I have scarring in my lungs, from Whooping cough as a child, and then from a Pulmonary Embolism in 2004. Now there are cysts - which have probably been there for about ten years. These were "officially" found however, in 2009, and it was originally thought that I had LAM.
I have CTs completed every two years, and so far the cysts aren't growing too much, and they aren't affecting my lung capacity or health. Sjogrens does that in so many other ways so I'm grateful for this.
There is a few other conversations in here around lungs - if you do a search for them you'll find them.
Hope this helps,
annalise
I too have scarring in the upper portions of both lungs. They don't know what mine is from either, but like you, they don't seemed overly concerned. When I questioned him about it, he reminded me that people only need 60% of their lungs to function 100%. That's why some with cancer can have a portion removed and be fine.
Anyway, he said the scaring did NOT affect my PFT"s, so I should not worry. He does "guess" mine is from years of upper respiratory infections due to my immune deficiency...I would agree.
Thanks, everyone, for your responses and insights.
I have an update.
I did send all of the CXR and CT scan results to my Rheumatologist (even before my scheduled visit with her). She immediately referred me to a Pulmonologist who specializes in Autoimmune Disease related lung issues as well as Interstitial Lung Disease. I was able to get in to see the Pulmonologist quickly and also had Pulm. Funct. Studies done.
Luckily and thankfully, my Pulm. Funct. Studies were withing normal limits. So I am happy about that.
The Pulmonologist is not concerned about the 3 mm lung nodule (it showed 1 cm on the CXR but 3 mm on the CT scan). She was more concerned about the diffuse bilateral pleural scarring and thickening (in a nodular pattern). She said it could be from the pleural effusions I had when I had Systemic Vasculitis in 1993-94 (which I had also considered). She also said it could be from the Sjogren's. Because of that possibility and because I have no baseline CT scan to compare it with, she is repeating the CT scan in 6 months.
I feel good about the results and about my visit with her. She seems incredibly competent and knowledgeable and I feel like I am under good care. She is also easy to talk with and answers all questions. So I am happy, LOL.
Another thing of interest is that she did tell me that Sjogren's can cause a lung condition that mimics Asthma and the two conditions are extremely difficult to tell apart. They both respond to the same type of treatment. Therefore, people who have the Sjogren's related lung condition which mimics Asthma are often misdiagnosed as having Asthma.
My Asthma was diagnosed by an allergist in 1980. No studies or tests were done. He diagnosed me because I was wheezing and because I had a lot of environmental allergies. Now I am wondering if I have Asthma or if I have the Sjogren's related condition that mimics Asthma. I am actually having zero problem with Asthma right now and I don't use any inhalers or any meds so I am not really concerned. However, if it starts to act up, I will see my new Pulmonologist and perhaps get a definitive diagnosis.
Thanks again to all who responded.
Glad you had a good report & you are feeling better about things.
I have lots of scarring. I had the two lower lobes of my R. lung removed at 14 y/o for Bronchiectasis. No one at that time, ever even suggested any further testing to figure out
why a 14 y/o kid ends up needing a lung removed.
Fast forward to the present (with lots of infections in between)...I am having SOB, lots of chest pain, coughing, horseness almost every day and even coughing up blood..and no one is too worried. I just had an endoscope on the 14th. The doc is watching what he called a duplication cyst behind my heart to see if it continues to grow.
I did have a test on the 21st that I think..correlates to the coughing up blood..it is likely that they flared up my esophagus. I am watching to see if it is going to stop.
It is as you say, very disconcerting to have doctors who are seemingly ignoring symptoms & giving no answers.
Hope things continue to improve for you.
SjoDry
SjoDry ..... I am sorry you are having so many lung problems (and have had them for so many years). I know it has to be concerning and aggravating to have the symptoms that you have. I am hoping that you do not develop any more or any new lung or chest problems.
Procedures can cause bleeding (and thus bloody sputum) if they irritate the throat or esophagus. Hopefully the bleeding will clear up.
It is my local doctors who never seem to know what is going on and don't seem to care. I do have excellent specialists at the U of MN. I am very thankful for them.
I am finding it harder to play by bass clarinet for even four measures at high volume. But honestly, I'm afraid to get tested. I'm not ready now to find out that I have problems.
Sharon
Imaging of the pulmonary manifestations of systemic disease
1. A G Rockall,
2. D Rickards,
3. P J Shaw
+ Author Affiliations
1. Department of Radiology, University College London Hospitals, London, UK
1. Dr A Rockall, Department of Academic Radiology, St Bartholomew's Hospital, Dominion House, St Bartholomew's Close, London EC1A 7BE, UK
Pulmonary involvement in Sjogren?s Syndrome is estimated between 9%?90% depending on diagnostic criteria and patient selection.
Scroll down to Sjogren?s Syndrome for all of the information:
pmj.bmj.com/content/77/912/621.full
Sharon ..... I know what you mean and understand. I was relieved to find that my PFT are good and that there is nothing glaring. Pluus, I am relieved to know that I have a very knowledgeable and competent Pulmonologist as my doctor.
Lighthouse ..... yes, I had read that article earlier this month and it is excellent. Thanks for posting the link to it. It is informative for everyone.
Glad to hear that you have had a good doctor visit with some good input and knowledgeable doctor. Glad also that you are having another scan i 6 months. That sounds logical. People with sjogrens can have all kinds of issues related to the autoimmune disease.
I was also diagnosed with asthma in 1980 with the mescaline challenge done. I wasn't much of a cougher, but I would get the tight chest. Actually, I always figured that much of my issues was from the sjogrens and that is what is happening. I have been on inhalers since 1980 and have had lots of weird infections plus some scarring and "spots" that have been watched.
It has been 4 years since my last MRI and doc wants one done again this summer just to keep track of me. It is really hard to keep track of all out issues sometimes and it gets so old running to the doctor plus the expense that sometimes you just want to say "no". When it comes to the lungs though we must be prudent and pay attention to how we are doing. Any shortness of breath should be addressed. Good luck. irish