RHEUMATOID OBLITERATIVE BRONCHIOLITIS - Lung Conditions C...

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RHEUMATOID OBLITERATIVE BRONCHIOLITIS

9 years ago•4 Replies

I'm trying to find out if any one else has this nasty disease? It occured in me when the Rheumatoid inflammation I was experiencing invaded my lungs and destroyed quite a few of my airways.

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patmiller1

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4 Replies

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BugsBunny9 years ago

Hi Pat,

I do not have the same disease as you and so I can only be of limited help. I have Pulmonary Fibrosis caused by Rheumatoid Arthritis. The one good thing that you could focus on is that anything Rheumatoid should react well to immune supressants. So hopefully, the doctors will be able to slow the progression of the disease. Good luck and let us know how you get on.

Regards

Mandy

patmiller1 in reply to BugsBunny9 years ago

Thank you Mandy. I have had this problem for 24 years - after being told initially that only two people in this country had lived longer than two years and not more than five. It just intrigues me that no one - not even the professionals - recognise it.

I was very lucky to be in the right place at the right time when I was first diagnosed and got helped by the 'main man' in the Brompton.

I've recently joined a Pulmonary Fibrosis group although I have no fibrosis. I would just love to meet/speak to someone else with the exact same thing. Strange isn't it? I wish you well with the PF nasty horrible disease.

Best wishes, Pat

Gilliam9 years ago

Hi Pat - I just wanted to drop you a quick email to say hi. I occasionally pop by to look at posts but don't often reply.

I have OB or constrictive broncialitis plus fibrosis of the lungs. I was diagnosed in 2006 and have had a complicated path with my disease, not helped by anti-TNF treatment which was given to me after the birth of my son when I had a terrible flare up of the RA.

If you wanted to get in touch that would be great as it can be a lonely disease !

Are you under Prof Wells at the Brompton?

Hope the PF course is going well.

Tracey

patmiller1 in reply to Gilliam9 years ago

Thank you for replying Tracey. Your disease sounds as uncommon as mine. I've been suffering a long, long time - 24 years now. Prognosis was that no-one had survived longer than two years! Here I am though - I never liked being told what to do! All those years ago I was under Dr Duncan Geddes, not sure if he is there any longer though. I don't come on here often but would like to keep in touch from time to time. Best wishes for Christmas and New Year Tracey.

Pat

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