Chronic Hypersensitivity Pneumonitis?

[mary1956]

Saw a Professor who is an expert in lung disease today and she told me that Birmingham was wrong in telling me I have IPF.. Looking at my lung biopsy results together with CT scan shows I have an auto-immune disease. Had a load of blood tests to try and isolate which one. They want to treat it with low dose chemo (cyclophosphamide) and steroids. Have others experienced this?

[Hidden]

I don't have this, but wonder if CHP could be the result of the IPF diagnosis, CHP in UK sounds like EAA (Extrinsic Allergic Alveolitis) but to be sure you would have to check back with your specialising consultant about these things.

A CT Scan show actual damage to lung tissue, so if this is the case, it would make sense you are having difficulty breathing.

Reads that may interest you:

nhlbi.nih.gov/health/health...

Patient UK refer EAA - Synonym: hypersensitivity pneumonitis

patient.co.uk/doctor/Extrin...

BLF have a page on EAA also.

I hope you get on ok with the chemo (cyclophosphamide) drug and that it helps improve things for you.

Hope you are soon feeling much better.

Best wishes BC

PS the blf helpline may be able to help you further with this, access contact details by clicking on the red balloon top right, helpline open weekdays 10am to 5pm

[mary1956 in reply to Hidden]

Thanks for the reply and the links. Regards Mary

[Chris3]

My diagnosis is chp and has successfully been treated with steroids to date. My consultant has told me that their are other options before transplant open to us. I think that includes cyclophosphamide. Hope you are as successful as me.

[jac493]

Hi Mary1956 i was diagnosed with adult plch in August lst yr after biopsies. It can be treated like urs if needed but im on watch and see . I stopped smoking and i feel fine now my exrays and lung function are lmproving. U need to find out what Auto immune disease u have to get more info . Good luck with ur treatment Jackie xx

[mary1956 in reply to jac493]

Hi, Thanks Jackie. They took loads of bloods on Friday to try and identify which one. Lots of the usual have come back negative. Brilliant news that your lung function is improving. That's what I'm hoping for.

[strawberry11]

Yes i had it a while ago and definitely stabalized me,think i was in for 3 times in the week,mandy