I know there's been recurrent pneumonias with some of our APS members, but I'm wondering if anyone has encountered an "inflammatory lung" condition?
Me: Warfarin for 5 years from DVT/PEs, also UCTD, lupus symptoms, Raynauds
4 pneumonias since 2010, all with hospitalization (though my Pulmonologist has looked at past lung scans and is re-evaluating that diagnosis)
This last "atypical pneumonia" was different -- dry unproductive cough, bad fatigue and has been lasting over 2 months.
I was hospitalized with IV drip 3 days, then 4 courses of antibiotics at home over next 8 weeks... after a course was ended, the "atypical pneumonia" would return in 3-4 days and they'd prescribe a different antibiotic. (I could not make enough sputum for a culture to identify the bacteria.)
After the 3rd trip to the ER, I was referred to a pulmonologist who suspects it as an inflammatory condition of lungs, which certainly makes sense with my autoimmune issues. I've been off warfarin, taking Lovenox injections, and was scheduled for bronchoscopy and lung biopsy, but I had a high def CT scan a day before procedure and my lungs had improved about 90% from hospital scan in October. Pulmonologist said we'll wait until lungs get nasty again to take biopsy so we can figure it out better. (He assured me it wasn't pulmonary fibrosis, so I'm down for whatever he suggests.)
THIS time, it has been 8 days after the last antibiotic and I suppose you could say, happily, the "pneumonia" has not returned yet. The pulmonologist says that the antibiotics with anti-inflammatory properties were probably calming the lung inflammation.
IF this is a chronic situation, then he will be discussing steroid treatment.
I am hoping this has been just a very bad "flare" and not a chronic situation. Life back to as close to normal as I can get next month!
By the way, I was contemplating staying on the Lovenox since I don't mind the injections-- no bruising, discomfort, etc. BUT in the 2 weeks I've been on it, I've experienced terrible daily migraines ... so next week, if the lungs don't flare up and need the bronchoscopy, I'll go back on warfarin and if the migraines stop, well then, that says that.
But it is a less anxious feeling knowing that you are anti-coagulated and not worry about staying in your INR range or test blood, particularly before an airplane flight or long trip. It would be better for taking extended travel too, and my Coumadin clinic says they have some people request it temporarily for that reason. No blood tests or worry when on that remote island playing Robinson Crusoe for a month (I can dream) -- only a bigger suitcase to hold all those syringes.