Does anyone with SS have bronchiectasis
Posted , 6 users are following.
I have SS & called my daily clearing of my phlegm as “my morning cough”. I put it down to gunge settling overnight which lack of saliva hadn’t washed away. Lately, being breathless when walking briskly etc. and following a lung X-ray I am going to see a respiratory consultant to check for bronchiectasis. Has anyone on here any comments re this sort of thing? I know there’s not a lot one can do for that except exercise. But days like today, all I would like to do, is stay in bed. Not that I will as I have too much to do........
0 likes, 5 replies
Megheart estelle44124
Posted
Yes Estelle, I have bilateral (both lungs) Bronchiectasis.
Mine was diagnosed following four months of almost non-stop coughing back in 2008. For me chest xrays had not revealed the problem however when I had an HRCT (High Resonance CT) scan it showed up.
Mine is mostly a problem when I get a chest infection, then it is dar-n hard to get under control. Usually at those times I have to be admitted to hospital on O2, IV antibiotics, ventolin nebulisers, chest physio and the works. I am fortunate in that I have what is called 'dry' bronchiectasis, so do not have the gunge on a daily basis although I get plugs of mucous from time to time.
i hope you get a good respiratory physician who diagnoses you properly and doesn't just put you in the 'asthma' basket. (Not that asthma is a walk in the park but rather that you get the correct ongoing management).
estelle44124 Megheart
Posted
aitarg35939 estelle44124
Posted
Hi Estelle
I have both, diagnosed with bronchiectasis last year but must've had it for several years. I assumed it was just a progression of COPD & ignored it, despite having a friend bug me to do something.
There isn't a connection between these 2 conditions except that SS can make it even harder to clear mucus. The SS lung effect is quite different, per my pulmo.
I was sick from August '16 to June '17, in the ED many times, admitted once. I thought I'd never feel semi-decent again. I, too, was diagnosed by CT. I now do 2 daily meds by nebulizer several times daily, take copious amounts of mucus thinner and even more copious amounts of water, and use a lung pounder vest once or twice daily.
I think you might be lucky to be diagnosed ahead of having pneumonia or other infections. Follow instructions from your doc & maybe you won't get sick.
There is a bronchiectasis forum here on this site.
KellyMG estelle44124
Posted
I have had a sore throat in 2 places for over a year now, at the back rim looks raw and below feels like I have a choking sensation and like a ball of phlem I can't seem to swallow or spit out? I'm hoarse, and clearing my throat all day but especially in the AM. I have I have been diagnosed with SS back in 2012 only symptoms were dry eyes then. I have celiac and that is managed well, I use restatsis for my eyes for past year, and they are still so dry my eye doc says keep using along with moisture drops during the day, ointment at night. I have had endo, colonoscopy, seen the ENT 3x and scoped, had video swallowing test done, a manemotry (measures esophagus function), 3 ultrasounds, and CT scan of my neck and all tests were fine except inflammed thyroid! I'm taking plaquenil 1x per day for swollen gland in front of my ear/neck since June, evoxac 3x day since April for dry eye, throat, but I believe I am getting to much of that I sweating bad 1hr after taking it, side effect says may cause excessive phlegm. I went off my evoxac yesterday to see if my dryness gets worse, throat clearing better, and blurred vision I believe is from evoxac. I see a pulmonary doctor this Friday because I'm wheezing when I am working out, and choking sensation gets worse! Any thoughts I am so sick of this sore throat, is this really SS?
aitarg35939 KellyMG
Posted
I can't answer that last question, Kelly, but I will say that tho 3 evoxac was too much for me, taking one before bed & one about 12 hours later works well for me. I still put drops in eyes.