Coughing Up Blood

[Michelle_Tower]

I was wondering if any one has ever coughed up blood after excertion? I have had this problem and many tests with no answers. Reply if possable. Thanks

[murphylotte]

How much blood are you coughing up? When I was taken to hospital I was coughing blood up and it was a lot. I started on blood thinner but it took 14 days before It was better and not coming blood up. I hope you get some answers soon cos its no fun! X

[sanderotter in reply to murphylotte]

I did it for A long Time it improve a little while taking asperine but the best results were achieved when I started siriolimus. Please understand hemoptoe needs serious treatment

[Anon75]

High INR? >4.0

[Michelle_Tower in reply to Anon75]

Not always.

[Anon75]

CXR? Underlying respiratory infection?

[Michelle_Tower in reply to Anon75]

No. I am fine unless I walk alot . CT scan shows ground glass opacities?

[MaryF Administrator in reply to Michelle_Tower]

Hi you are going to have to keep reporting it, as clearly it needs an eye kept on it. Has your actual Hughes Syndrome/APS specialist been involved? I enclose the relevant page from the charity website: hughes-syndrome.org/about-h... MaryF

[Michelle_Tower in reply to MaryF]

Thank you

[Kbjp]

Have you had a PE in the past? That seems an obvious reason but it seems like they would've seen that in a CT. I had a major PE incident last November,l that caused me to cough up bloody mucus, and then in late July I over exerted myself and coughed up some blood again. I was on blood thinners for 6 months after that, but I off blood thinners by then. (My lupus anticoagulant came back negative that time so they thought my previous test was a false positive, it wasn't!) I think what happened is I ripped some scar tissue in my lungs.

[Michelle_Tower in reply to Kbjp]

My pulmonologist has done many CT scans, blood tests and even HLA typing. There seems to be ground glass oppacities in all lobes. Over time there have been less and more and less (not stable) I even had a broncoscopy and lavage done. Just no concrete answers.

[diane1428]

I do agree that it gets worse with exertion. I worked for three weeks without a break recently. Knew it was bad but ignored it. Then one morning I noticed a nose bleed and blood in my urine. This was followed by coughing up blood. That was not only terrifying but very draining. I rested completely for three days and it has improved greatly.

My doctors are at a loss so I've cut down coagulation for a while but it's lowered my one. However hope to get back on track this weekend.

Best of luck. Diane