Hello everyone,
I've finally gotten another report typed up! This one should be helpful for those who are having lung and breathing issues.
Lung Complications and Sjogren?s Richard T. Meehan, MD, FACP, FACR
Dr. Meehan is from the National Jewish Health Hospital in Denver, Colorado. It is very impressive that he considers it important that patients who present with pulmonary symptoms should also be checked for an underlying AI disease. He said that sometimes the lung can provide the first clue in AI disease.
Clinical History which should point to an AI disease investigation:
? Typical sicca symptoms
? Parotid or lymph gland enlargements
? Refractory sinusitis ? constant sinus disease
? Increased dental caries
? Bronchiectasis and unusual infections
? Interstitial Lung Disease manifested by exertional breathlessness and non-productive cough
? Pleurisy, unintentional weight loss, fevers, fatigue, joint and muscle pain
? Impaired exercise capacity
Laboratory evaluations are then ordered to determine if there is any systemic inflammation.
Besides the usual laboratory blood work for AI diseases, Dr. Meehan outlined the pulmonary manifestations of SJS.
? Diffuse Lung Disease/ ILD (Interstitial lung disease)
? Airspace Consolidation/ Ground Glass Opacification
? Nodules/Cysts
? Airway Damage
? Serositis (pleural or pericardial thickening) This can be seen in underlying lupus.
NJH Clinical experience - Over the course of 18 months 244 patients were diagnosed with primary or secondary SJS. Many were referred for ILD or bronchiolitis with no prior suspicion of SJS.
Therapeutic Approach and Management
Immune suppressive drug choice:
? Prednisone
? AZA (Imuran) - for milder or slowly progressive disease
? CYC (Cytoxan)- probably most effective against ILD, but risky
? MMF (Cellcept)- less toxic than CYC, may be better tolerated than AZA.
? Cyclosporine - may be effective in patients with intolerance to above.
? Tacrolimus - Similar to cyclosporine, more expensive but may be better tolerated.
? Combinations - Infliximab, Cellcept or AZA helpful in RA associated Bronchiolitis.
? Rituximab - may be helpful in LIP.
? Mild or non progressive bronchiolitis may require only Hydroxychloroquine (Plaquenil) and ?watchful waiting?.
The ideal immunomodulator or immune suppressive therapy for SJS patients with ILD has not been identified, and Dr. Meehan is calling for multicenter SJS treatment trials.
Marla
Another great report! Thank you so much, Marla.
I really wish that more doctors understood all of this. When I think of how sick I got when I first developed AI conditions, it makes me sad to think that an alert doctor might have caught things before they progressed if my first symptoms, air hunger and pleurisy, had been taken seriously. I find it so strange now, when I think back, that no one thought these things were weird in an otherwise healthy twenty-seven-year-old. They just gave me so tylenol w/ codeine and sent me on my way without any warnings about what I should watch for or any blood tests.
Thanks Maria. Almost like we were sitting at the conference. Your posts have been great.
My pulmonologist said my adult onset asthma is from sjogren's....like everything else. The never ending disease.
Thank you, Marla.
His talk raises a lot of questions. The medications sound very troubling, like poison.
I got something like adult onset asthma last year (air hunger, hard to breathe, panting, non productive coughing).
I had never experienced that before in my life (I'm 52).
The general MD's said I had "asthma," but when I finally saw the pulmonologist, he said I didn't have asthma.
Livvie2
Yes, I worry about my daughter who has had asthma since she was a little girl. She also has ovarian cysts and IBS, so I truly think that she has some early signs of following in my footsteps. She lives in Denver, so I told her about Dr. Meehan and the Jewish Hospital there. I've told her that the next time her lungs act up, to get herself to that hospital.
I had recurring walking pneumonia when I was a young teen. I wonder if it was an early indication for me?
Marla
Thank you so much for posting the information you received. I am printing and keeping it for the future. Hugs to You. Redetha
Marla
Thank you for this. About 7 years ago, before the SJS diagnosis, I suddenly developed asthma, and a ct scan showed mild bronchiectasis. I've been using three inhalers since then, and fortunely, have not had any bad chest infections. Before the inhalers, I used to get at least two nasty bouts each winter.
The interesting thing is, the asthma nurse maintains my asthma is not 'typical', and at one time threatened to withdraw my inhalers. However, the GP stopped that happening.
Again, thanks for the very detailed report.
Kathyx
Katy, that's interesting. My doctor never saw concrete proof of my asthma, leading me to believe that's not what it was. I felt like he was grabbing the most convenient label for breathing issues rather than really understanding that something weird was happening to me. Once my thyroid got under control, my lungs improved considerably, and they've felt even better (still not 100%) now that I'm being treated for SJS.
Thank you so much for this report. Yes I had walking pneumonia too as a teenager and throughout my 20's. Also pleurisy. I now have adult asthma.
susanep :)
How intesting
One of the first 3 main syptoms I came accross when we started to figure this out was lung issues. I ended up at a lung specialist, who ran a bunch of test and told me I had an autoimune disease and pointed me to my Rhuemy.
I had shortness of breath, sensitivity to chemicals that caused asthma, enlarged Lymph nodes. I also had nodules in my lungs, about eight I believe but not large enough to biopsy.
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.