Constant lung Bleeding is wearing me down

[shlinde]

I was diagnosed with Lupus 13 years ago (2003) and 2 years ago my lungs started bleeding on and off. They put me through all the tests CT scan , bronchoscopy, countless X-rays, biopsy, and more. I was hospitalized off and on for months. They found 3 nodules in both my lungs but after did not really wanted to commit to the diagnoses of SLE related lung problems. There was no virus, bacteria nor fungus found and when I was put on prednisone for a Lupus flare my nodules disappeared and had formed craters in my lungs. I found a research paper in a publication about lupus related lung problems in the USA (I am in Canada) and they were talking about the same symptoms. The bleeding the nodules and the craters after the nodules disappear and they clearly said it is one of the symptoms caused by lupus and should be treated immediately with immune suppressors /meds like cellcept.

I am waiting for my appointment in a lupus clinic and hope they will have an idea what to do because everybody else is helpless (my rheumatologist , pulmonary specialist, family doctor) and tells me I should monitor and as long as it stays dormant I should be ok. But this does not help and certainly does not give me any comfort I couch up blood clumps and fester almost every day. So I know my lungs are constantly under attack and scar more and more.

[Tiras]

Not sure if my lung issue is related to lupus but, I do have it. No bleeding just that the PO2 test showed on 62% oxygen in my blood. It should be 90+.

I am in the southeastern U.S. in the state of Alabama.

I do hope you get answers and get better soon.

👣Tiras👣

[Maureenpearl]

I have MCTD Lupus SLE With lung involvement (Pulmonary Fibrosis). I have ambulatory oxygen, which I have been using for the last 6years.

The base of my lungs are damaged due to the lupus.

[shlinde in reply to Maureenpearl]

Maureenpearl do you ever had lung bleeding or such. I have the worst time with mucus build up in my lungs always at night around 12 and in the morning when I wake up. 6 years is a long time already. What meds are you taking for this?

[Maureenpearl]

I have never had bleeding lungs but a few times I have been sent to the A&E for blood test to check if I have a blood clot in my lungs.

Yes I can sometimes cough a lot in the night but it's usually non productive and some mornings very productive.

Hope you get better and the right medication soon.