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Sticky Blood-Hughes Syndrome Support
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APS and lung inflammation

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. :-(

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I have a friend here in WV who suffered from similar recurrent lung issues. The local docs totally screwed up when they diagnosed her with some autoimmune issue, and to treat it, they removed one lung lobe. She did not improve. Her husband then took her to Cleveland Clinic where she was found to have to a very, very rare parasitic infection indigenous to the Appalachian Mountains. They matched her with the proper anti fungal, antibiotics and --cured! ( except for the that part about losing 1/4 lung capacity.)

I trust you do not live in the southern Appalachians?


OMG! At least I can rule out parasitic Appalachian infection since I'm a west coaster. But her sad misdiagnosis does show how we really need to try to stay on top of info and possibilities of why our bodies do the strange stuff they can do.


Hi, it is very very important that you continue to push them to look for the cause, my children had inflamed lungs and awful coughs which did not clear for months and left them very ill, Eventually it turned out to be Mycoplasma Pneumonia. I hope they get to the bottom of the cause. MaryF

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I have had Mycoplasma Pneumonia in my 20s.


Me too. A little under a year after I was supposedly well I had a coughing fit in the middle of a college math class. I could not stop coughing as the entire class came to a stop and fellow students gathered round offering Kleenex and cough drops. Finally I hacked up a rather hard blob of about 1 . 5 cm in diameter. I looked up and the professor handed me a glass of wate and said, "You had pneumonia last winter, didn't you?" I nodded yes and he added " well, NOW it's over."


For the record... it's been a long, long year of life changing discovery for me.

My coughing/ pneumonia problem I wish was an Appalachian tick problem!

I have been diagnosed with Lupus which attacked my lungs.

New game, more serious, with nastier drugs to keep it in control.

Also the warfarin clinic and doctors told me there's no connection of heparin injections causing migraines. (Was on heparin over a month, waiting for the lung biopsy)

Lo and behold, within days of stopping the injections and back on warfarin, the endless migraine stopped. It was the first time I ever experienced one. My condolences to those afflicted with them! But I have not had another migraine since then, the past year, so I am convinced my hunch was correct that the heparin caused it. Maybe my body was so comfortable with the warfarin for years, that it reacted being off of it.


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