(copied from other post, because I put it on the wrong board)
My mother has Sjogrens. She also had lung cancer last year and had 1/6 of her lung removed. Since the surgery, she has had difficulty breathing at times. Only after getting up and walking a few steps. She loses her breath and gets very weak, has even passed out a few times. She can usually stop and rest for a minute and then continue walking.
She has been to pulminologist and cardiologist and general doctor, and no one has been able to determine the cause of this occasional breathlessness. She is now thinking this could be related to Sjogrens. Has anyone else experienced symptoms like this?
Thanks in advance!
Yes..am currently having similar issues..not passing out. I also had 2/3 r. lung removed.
Sjodry
Yes, I was dx with Sjogrens 6 or 7 years ago. I have been being treated for it all along, but kept getting weaker and almost unable to walk. I'll give you the short version.
I went tp pulmon, neuro, cardio, rheumy, GP, gastro, and more I can't think of. A couple found "a little" wrong, but nothing they could help with and sent me back to my GP
He then sends me to the Univer of MI Hospital for tests. Bingo. I have something in my lungs besides emphysema (former smoker) . I am now on o2 24/7 and will be forever. I am being blunt because I screwed around for 3-4 years not being able to get off the couch and didn't know why. Don't mess with regular drs, go to a University Hospital. The Sjogrens has caused tissue to grow in my lungs and is fibroid growth. No meds, no fix.
They do lung transplant for ppl from lower 60's on down depending on other health issues, donor availability etc. Lucy
Yes, I have had some lung/breathing issues lately and they are sending me to a pulmonologist. SJS can cause lung issues, kidney issues, all types of various symptoms and it can involve and damage different organs. Everyone is different though, so as the previous poster stated you should try to get her seen as soon as possible in case there is anything that can be done to prevent further damage.
Take care.
Is she coughing along with the shortness of breath? And, did she have radiation treatments?
The reason why I ask is that my dad is coughing and also has shortness of breath right now. He does not have Sjogren's. His oncologist believes that it is coming from the radiation treatments he finished at the end of December. The cough usually starts between one to three months of stopping radiation. And, the effects of radiation can last for up to a year. I just e-mailed him a bunch of information from the Lung Cancer Alliance and the Inspire Lung Cancer Support Community. It is in reference to the cough.
His oncologist currently has him on a steroid treatment and a cough medicine. What the people posting about on the forums were concerned about, is that sometimes the cough can turn into pulmonary fibrosis. If it does, you have a 2 to 5 (I think those were the numbers) life span.
Sometimes, the cough is permanent because of the damage from radiation.
Lung Cancer Alliance Website:
http://www.lungcanceralliance.org/
Inspire Lung Cancer Support Group:
http://www.inspire.com/conditions/lung-cancer/
Sjogren?s Syndrome Presenting with Interstitial Lung Disease
http://www.japi.org/february2005/CR-153.pdf
Pulmonary lesions associated with Sj?gren's syndrome: radiographic and CT findings
http://bjr.birjournals.org/content/76/912/880.full
Pulmonary involvement in Sj?gren's syndrome
http://rheumatology.oxfordjournals.org/content/42/5/697.2.full
Interstitial lung disease in primary Sj?gren syndrome
http://www.ncbi.nlm.nih.gov/pubmed/17099028
Interstitial lung disease associated with Sj?gren's syndrome: Clinical manifestations, evaluation, and diagnosis
http://www.uptodate.com/contents/interstitial-lung-disease-associated-with-sjogrens-syndrome-clinical-manifestations-evaluation-and-diagnosis
Clinical manifestations of Sj?gren's syndrome: Exocrine gland disease
http://www.uptodate.com/contents/clinical-manifestations-of-sjogrens-syndrome-exocrine-gland-disease?source=see_link
Clinical manifestations of Sj?gren's syndrome: Extraglandular disease
http://www.uptodate.com/contents/clinical-manifestations-of-sjogrens-syndrome-extraglandular-disease?source=see_link
Classification and diagnosis of Sj?gren's syndrome
http://www.uptodate.com/contents/classification-and-diagnosis-of-sjogrens-syndrome?source=see_link
Pathogenesis of Sj?gren's syndrome
http://www.uptodate.com/contents/pathogenesis-of-sjogrens-syndrome?source=see_link
Sjogren's Syndrome and Lung Disease
http://diseases.emedtv.com/sjogren%27s-syndrome/sjogren%27s-syndrome-and-lung-disease.html
Pulmonary Fibrosis
http://diseases.emedtv.com/pulmonary-fibrosis/pulmonary-fibrosis.html
THanks everyone. No she did not have radiation. Just 1/6 of her lungs removed and she was then cancer free (PTL). She DOES cough though and then the strange shortness of breath after getting up to walk.
I was hoping for a solution, but since she has had lung xrays, heart tests, and everything else the drs could think of, this may just be a general progression of Sjogrens.
Thank you all for your comments.
Sarah