Hemosiderin Laden Macrophages in the lungs - anyone have experience

[Theresa]

Justin's pulminologist has done tests in December and again last week and the lab results show that he has hemosiderin-laden macrophages in his lungs. He says this is an indication that there is bleeding in his lungs. He does not know how much/how bad, but Justin's airway looks very clean.

To do the test, they did a bronchoscopy and put saline in his lungs and then pulled it back out. Then tested the saline.

Justin is still having trouble getting enough air when he tries to exercise and his subglottic stenosis is doing well - not enough restriction to cause as much trouble as he is having.

I'm having trouble finding any information on the internet that I can understand or that relates to Wegener's. Treating the Wegener's and getting him in remission is the solution, I'm sure. I was just wondering if anyone else has had this or if anyone has any other information.

[Sangye]

Theresa, if Justin's lungs are bleeding that is severe Wegs activity-- alveolar hemorrhage.

In 2009 I knew I was flaring and was admitted to JHU pulmonary ICU. Among other symptoms I was coughing up blood clots. It lessened over the course of a week, just in time to do a bronchoscopy. The pulmy said he only saw dried blood--and not much of it. So he concluded it wasn't a Wegs flare and discharged me with a dx of bronchitis. When Dr Seo found out the next morning he was really upset and called me back in. He said ANY blood in the lungs of someone with Wegs lung involvement is alveolar hemorrhaging. He put me on ctx right away.

[WeggieParent]

Theresa - how are they treating Justin's hemosiderin-laden macrophages? My daughter had a bronchoscopy last week and the lab results are showing the same thing. I remembered your question from a few weeks ago because I had never heard of it before. Now she has it! That's why this forum is so helpful!!

My daughter feels fine with no symptoms other than an occasional cough. They found tiny traces of iron in her lavage fluid meaning that she is bleeding somewhere. They found no active bleed anywhere in her lungs but said that WG will cause organs in the body to 'weep' blood and that means she is having a flare. They have increased her meds and will check her again in 3 months.

Please let me know how they are treating Justin's hemosiderin-laden macrophages and if he is feeling OK!