Sjogren's & Lungs History, Diagnosis & Issues (Lung, Lungs)

[lookingup]

Hi there.  In a great way for everyone to learn and express about their lung issues with Sjogren's, please respond to this post with your information.  Feel free to share with your doctors also as it may help with these rare conditions.

NOTES: Please, Sjogren's patients only with lung issues.  Please do not overexaggerate or put wrong information - good, accurate information will help everyone.

CURRENT AGE:

SEX:

SMOKER/NON-SMOKER:

AGE OF SJOGREN'S DIAGNOSIS:

AGE WHEN LUNG ISSUES STARTED:

HAVE YOU HAD CT SCAN?  BRONCHIALOSCOPY?  BIOPSY? - ELABORATE ON RESULTS:

DIAGNOSED LUNG ISSUES (ONLY IF CONFIRMED):

SYMPTOMS (LUNG SPECIFIC):

TREATMENT / RESULTS (PLEASE ELABORATE):

DO YOUR LUNG PROBLEMS AFFECT DAILY LIFE:

OTHER NOTES, ETC:

Please make sure all information is accurate.

[lookingup]

AGE: 32

SEX: F

SMOKER/NON-SMOKER: Non-Smoker

AGE OF SJOGREN'S DIAGNOSIS: Not Sure, SSA Counts high at 24 years old though

AGE WHEN LUNG ISSUES STARTED: 31 years old

HAVE YOU HAD CT SCAN?  BRONCHIALOSCOPY?  BIOPSY? - ELABORATE ON RESULTS: 3-5 mm nodules/cysts on lungs.  CT Scan only.

DIAGNOSED LUNG ISSUES (ONLY IF CONFIRMED):  Via CT Scan, originally thought to be LAM Disease through novice doctor, but through better doctor, diagnosis of Sjogren's with Follicular Bronchiolitis.

SYMPTOMS (LUNG SPECIFIC): Non-productive cough (10-40 per day), constant runny nose, occasional shortness of breath, other Sjogren's issues including stomach pain / heartburn, but no dry eyes or mouth

TREATMENT / RESULTS: Netty Pot (no help), Orange Peel Extract (for heartburn - no help), considering corticosteroids.

DO YOUR LUNG PROBLEMS AFFECT DAILY LIFE: Sometimes, it depends on if I'm sick, or if I'm having a bad spell.  However, my constant cough is annoying and my breathing can affect my talking (completing sentences).

OTHER NOTES, ETC:  Look forward to seeing others results.  Please elaborate on treatments and effects (both good and bad).  Also, please elaborate if you are a smoker or non-smoker.  Oddly enough, I can run 2-3 miles, but then cough all day and have trouble breathing sporatically.

[sugarbugar]

Hi!  Thanks for posting this!  I sure hope more reply because I am curious how many do have their lungs affected.

CURRENT AGE: 35

SEX: Female

SMOKER/NON-SMOKER: Never smoked a day in my life!!

AGE OF SJOGREN'S DIAGNOSIS: 34

AGE WHEN LUNG ISSUES STARTED:  Really bad 34 but had one bad bout around 29-30

HAVE YOU HAD CT SCAN?  BRONCHIALOSCOPY?  BIOPSY? - ELABORATE ON RESULTS: CT Scan-showed inflammation, air trapping, and something about the way the bronchioles looked?,   PFT shows air trapping, low lung flows and volume.  The bronchialoscopy is scheduled for July.  I did do a provocation test that was stopped because of my heart and that's rescheduled too.  No biopsy as of yet.

DIAGNOSED LUNG ISSUES (ONLY IF CONFIRMED): Some type of Bronchiolitis, can't remember the full name and xerotrachea.  Waiting for the full report from my Dr's office so I can get the full name. 

SYMPTOMS (LUNG SPECIFIC): Shortness of breath, feeling like when I breathe in, it's hitting a brick wall, but also feels that way when breathing out.  Shallow breathing, burning and a since of stickiness in my lungs.  Constant dry cough and chest pain. 

TREATMENT / RESULTS (PLEASE ELABORATE):  We have tried Advair and Flovent and Plaquenil(To try and treat Sjogren's in general) to no success.  I am doing Hypertonic Saline Solution in a nebulizer that seems to help and will be starting cellcept this week as long as my kidneys are o.k.  He says it's a moderate case that will keep progressing aggressively if it's not treated soon.

DO YOUR LUNG PROBLEMS AFFECT DAILY LIFE: Absolutely!  I only work out 3-4 days a week for about 30 minutes.  However, I have problems with my heart too and if it's acting up as well, it's even less.  I used to work out 6 days a week at least 2 hours.  There are days my lungs are so bad I'm out of breath the minute I get up and it's very difficult to carry on anything for daily life.  I can't shop by myself nor play with my kids on these days.  I have yet to find a reason why these days are bad, there is no link I see as of  yet.  I have noticed fatigue can make my breathing worse. 

OTHER NOTES, ETC:
I would be very curious of anyone gets back to normal everyday activity.  I feel blessed to say I am seeing Dr. Meehan at National Jewish who is very knowledgeable in Sjogren's and it's affect on the lungs.  I also see Dr. Kassan whose an amazing Rheumatologist but as of right now no meds are working.

[Scottietottie]

Hi

My lungs aren't affected.

Take care - Scottie

[lookingup]

Hi Sugarbuger -

Thanks for your post.  Your bouts of breathlessness may be attributed to sickness that really gets everything going.  Do you have a constant runny nose?

Check out these links also (medical journal articles discussing lung issues):

http://ukpmc.ac.uk/classic/picrender.cgi?artid=896354&blobtype=pdf

http://medind.nic.in/iae/t09/i2/iaet09i2p93.pdf

Look forward to more posts.

[Pisces24]

AGE: 53  Female, Definitely a Non-Smoker    Diagnosed SJS: March 2009

Noticed spots on both lungs first  Sept 09.  CT done and then 2nd CT done in Feb 2010. Between times some spots went away, some got smaller & 2 more appeared.
Bronschoscopy done March 2009 = Results were no infection, no cancer and no fungi.  Doesn't seem to know what it is but spots attributed by pulmonologist as Sjogrens related, systematic.

No symptoms though blood oxygen a bit low which I attribute to having a sit all day job and not exercising like I should. Pulmonologist suggested aerobotic exercise which I am doing 15-30 min per day and being retested in Sept 10.

Treatment & How it is Affecting Me:  None except I gotta exercise and find a good exercise music tape. 
Other: I do sinus flushes daily but I started that March 09. I don't understand WHY the pulmonologist can't figure out exactly WHAT it is. Can't help but feel he says it is SJS related as he doesn't know what else to call it.

[lookingup]

Thanks for your reply.  Is anyone experiencing chronich cough or runny nose (sinisitus) - 3 months or longer?

It will be good to have as many bios as possible for everyone to understand these rare combinations.

[kwolfsheimer]

CURRENT AGE: 42

SEX: F

SMOKER/NON-SMOKER: Non-smoker

AGE OF SJOGREN'S DIAGNOSIS: 40

AGE WHEN LUNG ISSUES STARTED: ?? 25

HAVE YOU HAD CT SCAN?  BRONCHIALOSCOPY?  BIOPSY? - ELABORATE ON RESULTS: Chest X-Rays and CT Scan

DIAGNOSED LUNG ISSUES (ONLY IF CONFIRMED): Bouts of bronchitis, two cases of pneumonia

SYMPTOMS (LUNG SPECIFIC): Chronic bronchitis-- I get this about twice a year, several bouts of pneumonia, difficulty breathing, recently had surgery and had really low oxygen rates, the hospital could not believe that I was not a smoker or didn't have asthma of some kind; I'm not sure how much this relates to the Sjogren's as I've just been chronically sick for a long time

TREATMENT / RESULTS (PLEASE ELABORATE): was on a daily nebulizer for about six months; Flonase, steroids, antibiotics (I'm a little fuzzy on this because it's been a year since I've taken any treatments for a lung issue and to be honest without checking my medical records, I can't provide more). Temporary relief. I use a humidifier at night to help breathing.  

DO YOUR LUNG PROBLEMS AFFECT DAILY LIFE: Yes, especially during the winter when I am more prone to bronchitis and infections.

OTHER NOTES, ETC: Like I noted, I am not sure how much of this corresponds to the Sjogren's.

[Smee]

NOTES: Please, Sjogren's patients only with lung issues.  Please do not overexaggerate or put wrong information - good, accurate information will help everyone.

CURRENT AGE: 46

SEX: F

SMOKER/NON-SMOKER: Non

AGE OF SJOGREN'S DIAGNOSIS: A few weeks ago.

AGE WHEN LUNG ISSUES STARTED: 24.

HAVE YOU HAD CT SCAN?  BRONCHIALOSCOPY?  BIOPSY? - ELABORATE ON RESULTS: Bronchoscopy. xrays, CT, no biopsy.

DIAGNOSED LUNG ISSUES (ONLY IF CONFIRMED): Allergic Asthma, bullous lesion right lung.

SYMPTOMS (LUNG SPECIFIC): Coughing, choking, asthma attacks. shortness of breath.

TREATMENT / RESULTS (PLEASE ELABORATE): Better since changing my diet and being very careful about exposure to environmental allergens and chemical smells and fragrances.

DO YOUR LUNG PROBLEMS AFFECT DAILY LIFE: Most definitely.

OTHER NOTES, ETC: OK, whole ugly story: Major problems since I was 24 when I had viral pneumonia and was left untreated because I had no insurance. Over a year later my cough had not cleared, and I finally went to another doctor who ordered x-rays, and then a CT scan when he saw a spot on my right upper lobe. His conclusion was that it was scarring. With some prednisone I cleared up in time. When I got pneumonia was when I started choking on food all the time.  I've always had a habit of drinking with food because I would choke, but not as badly as during and after the pneumonia. I have had continuing asthma issues since then that have gradually worsened with time. The doctors feel it is allergy based asthma. I notice a definite connection to whether or not I'm dehydrated, but you can only drink so much water! Last year I insisted to my GP that I needed to see a pulmonologist, as I was on a lot of meds and my coughing was still totally out of control. I woke up nightly with my mouth dry and choking, and coughing. I was already on Symbicort, Pulmicort, albuterol as needed, nasacort, astelin, and Zyrtec. I also was on prednisone. Max dosages twice a day on the Symbicort and Pulmicort. The GP xrayed my lungs and tada, another 'thing'. I was scheduled for 2 CTs and both radiologists felt that it was a bullous lesion, probably not cancerous. A bronchoscopy was scheduled but the doctor could not reach the lesion. A scan 6 months later showed no growth. I need to make another for followup to check growth. I have recently changed my diet to exclude gluten and some other foods that blood tests showed me as sensitive to, and have had very good results and have been able to cut back my meds.

[maiestro]

CURRENT AGE: 29

SEX: F

SMOKER/NON-SMOKER: Non-smoker

AGE OF SJOGREN'S DIAGNOSIS: 29

AGE WHEN LUNG ISSUES STARTED: 29

HAVE YOU HAD CT SCAN?  BRONCHIALOSCOPY?  BIOPSY? - ELABORATE ON RESULTS: CT. A number of thin walled cysts (2-8mm) spread throughout my lungs.

DIAGNOSED LUNG ISSUES (ONLY IF CONFIRMED):  LAM.  Three different doctors (2 pulmonary and 1 rheumy) all believe cysts are due to LAM, not Sjogrens.  However, they also say that it is far too early to tell, and can't prove anything until I get worse.  A lung biopsy is not recommended (or wanted) at this stage.

SYMPTOMS (LUNG SPECIFIC): Nil.  No symptoms for lungs at all.  Sjogrens symptoms are dry eyes (bad to severe) and glands around mouth/throat are symptomatic, some mild arthritis which doesn't cause problems.

TREATMENT / RESULTS (PLEASE ELABORATE):  No treatment for lungs.  Nothing can be done until I start getting worse.  On plaquenil for Sjogrens.

DO YOUR LUNG PROBLEMS AFFECT DAILY LIFE:  No.

OTHER NOTES, ETC:  Not yet.

[irish]

Just out of curiosity---I am wondering if you are wanting this info for your own use or if you are doing a research study for a class. Possibly work for specialists doing sjogrens research, etc?

So many of the people with sjogrens have some form of lung issues and fibrosis is one of the more common diagnoses. Sjogrens can affect the small blood vessels so possible that lungs can be affected this matter. Probably more knowledge will be gained as time goes on. The interesting thing is that people will have another autoimmune disease that can affect the lungs and it is hard to sort these symptoms and diseases out. Irish

[Katybarstool]

CURRENT AGE: 53

SEX: female

SMOKER/NON-SMOKER:soked between ages of 11-25. Non-smoker 27 years

AGE OF SJOGREN'S DIAGNOSIS: 50

AGE WHEN LUNG ISSUES STARTED: 25

HAVE YOU HAD CT SCAN?  BRONCHIALOSCOPY?  BIOPSY? - ELABORATE ON RESULTS: CT scan showed bronchiectasis in mid and lower lobes of right lung. recently, there have been crackles in left lung, but no infections.

DIAGNOSED LUNG ISSUES (ONLY IF CONFIRMED): Bronchiectasis and asthma (allergic and exercise induced)

SYMPTOMS (LUNG SPECIFIC): Had chronic cough and shortage of breath until right meds were found

TREATMENT / RESULTS (PLEASE ELABORATE): salmeterol, salbutamol, tiotropium bromide, nasonex,loratadine.

DO YOUR LUNG PROBLEMS AFFECT DAILY LIFE: Yes, generally need salbutamol if I'm to do any uphill walking, meet with cigarette smoke or after cold viruses. Limits my exercise.

OTHER NOTES, ETC:

Please make sure all information is accurate.

Like Irish, I would be interested to learn the reasons for this survey.

Kathyx

[lookingup]

My name is Rick.  I am actually just trying to get more information on my wife's condition (32 YO).  She was originally diagnosed with LAM, and her doctors are having trouble getting a 100% diagnosis, so I was just trying to get information for her and everyone else.  As bad as Sjogren's is, trying getting one for LAM.  We are now fairly positive she has Sjogren's with Follicular Bronchiolitis.  Forums like this help everyone with rare conditions communicate and learn.

Maiestro - first read this - http://insciences.org/article.php?article_id=9251

You need to contact Dr. McCormack at the University of Cincinnati - I was told the same as you by my doctors.  He has just developed a way to separate LAM from other diseases without the need for a lung biopsy and it just got accepted.  Tell your doctors too.  My wife was one of his first patients after his study was published.  He is VERY good and VERY helpful.  Only contact him if you have a LAM diagnosis though, because he's not an autoimmune lung specialist, but can separate the two.  Personally, I would ask your doctor to work with him and have him send you the VEGF-D kit, so you can get tested and have more info.  You can also contact me - I'm NOT a doctor, but my wife has been going through the same as you and being a web person, I've tried to learn as much as possible.  I don't know how to do it, but you can message me through the boards.  Too be honest, if you get the same diagnosis as my wife, we've been looking for other people to talk with and compare notes with.

[poppyrite]

Hi there.  In a great way for everyone to learn and express about their lung issues with Sjogren's, please respond to this post with your information.  Feel free to share with your doctors also as it may help with these rare conditions.

NOTES: Please, Sjogren's patients only with lung issues.  Please do not overexaggerate or put wrong information - good, accurate information will help everyone.

CURRENT AGE: 73

SEX: Female

SMOKER/NON-SMOKER: non-smoker
AGE OF SJOGREN'S DIAGNOSIS: Probable connective tissue disorder noted 53-  muscle and joint pain,  bloodwork showed high ANAs.  I did not follow up on this

AGE WHEN LUNG ISSUES STARTED:  63 or so

HAVE YOU HAD CT SCAN?  BRONCHIALOSCOPY?  BIOPSY? - ELABORATE ON RESULTS: All three.  I had a Vats procedure at age 66 which showed follicular bronchiolitis caused by a connective tissue disorder.  For various reasons the pathology slides were read by 4 different pathologists with the same conclusion. I have had several bonchoscopies and numerous CT scans following the original diagnosis.

DIAGNOSED LUNG ISSUES (ONLY IF CONFIRMED):follicular bronchiolitis,  bronchioectasis

SYMPTOMS (LUNG SPECIFIC): shortness of breath- PFTs show moderate loss of lung function;  cough,  sometimes dry and sometimes mucous producing (due to bronchioectasis);  lack of stamina,  and exteme fatigue.  These two latter symptoms are not solely related to lung function
TREATMENT / RESULTS (PLEASE ELABORATE): immediately following VATS diagnosis-  one and a half years of Prednisone-  six weeks on dosage of 40mg,  the rest of the time spent tapering.  I believe this halted the immflamatory process. One year or so on antibiotic per Mayo Clinic article.  Cellcept for several years.  Currently using Zyrtec,  Nasonex, Musinex, Symbicort,  Albuterol inhaler as needed to prevent allergy symptoms leading to bronchitis and pneumonia. Also have a prescription for a strong antibiotic and another for a steroid to take if I feel I may becoming sick. Even with treatment I have had two severe pneumonias,  one requiring hospitilization;  pseudomomas infection,  bronchitis.  My pulmonologist feels my lungs are stabilized and after one more CT scan next year I will be followed by XRays.

DO YOUR LUNG PROBLEMS AFFECT DAILY LIFE: Yes.  The shortness of breath prevents walking much.  I'm quite inactive. The coughing is debilitating. My main problem is  extreme fatigue.
OTHER NOTES, ETC:  (1) Although I positively have a connective tissue disorder my diagnosis of Sjogren's is not definitive.  When I first saw a rheumatologist the blood work was most consistent with Sjogren's.  I did not have dryness then nor do I now.  For awhile I saw a rheumatologist at Duke University who used the diagnosis of undifferentiated connective tissue disorder.  (2) I have had breast lymphoma twice-  first in 1989 at age 52 and next in 2004 at age 67.  This is an extremely rare diagnosis and to have had in twice in two different breasts is undocumented anywhere as far as I know.  Again my pathology slides were read by experts.  I mention the lymphoma as it is sometimes seen with Sjogren's.  As you probably know by now follicular bronchiolitis is also very rare and little understood.  I am so sorry you wife is experiencing this at such a young age.  I would urge her to be vigilant with mammograms as both my malignancies were detected this way.  Also to seek VERY good care for her lung problems.  Because of the rarity of the follicular bronchiolitis it would be to her advantage to be seen as a good teaching hospital.  Despite these challenging problems my life has been full and happy.  We can hope that new and better treatments will be coming along to help your wife and othes.  Please feel free to pm me if you have any further questions.

Please make sure all information is accurate.

[BonusMom]

Female diagnosed at age 44 with asthma.  No other lung issues.  Non-smoker.