Hypersensitivity pneumonitis - British Lung Foun...

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Hypersensitivity pneumonitis

cazza34 profile image
cazza34

Hello I'm brand new to this forum. I was diagnosed with Hypersensitivity pneumonitis in Nov 2015, after getting ill on holiday in Japan, prior to this nothing. Ended up in hospital for a week with lots of tests and this diagnosis. Ive been on inhalers, sometimes antibiotics and steroids. Always get breathless and have a cough. Recently bought a sats machine and my god they are so low! never beyond 88 and if I walk to the loo next door to my bedroom or go upstairs drops to 64...comes back up quick. Saw consultant 3 weeks ago and am booked in for an oxygen assessment tomorrow. No idea what to expect...huge implications as I am self employed. I'm so tired all the time...which I expect is my lack of oxygen. Anyone else have Hypersensitivity pneumonitis?

4 Replies

I had never heard of this until I read your post so I looked it up. Yes I would suspect so of your fatigue is related to the need for oxygen. There are three different types acute, subacute, and chronic do you know which catatgory you are in?

Linnie13 profile image
Linnie13 in reply to docmel

No I don't but I'm at hospital this month so will ask , thanks for taking time to look it up and reply x

Hello cazza34 .

Hello and welcome. I'm so sorry you are going through this. I have been on oxygen for about eighteen months now. It takes some getting used to, but ultimately, will help you have more energy and protect your vital organs from being starved of oxygen. It must be so difficult being self employed. 😔

I don't have the same condition as you, but I just wanted to say welcome. Please do come here often. It's such a good place to give and receive support.

Take good care.

Cas xx 🙋🐕🐾

Hello Cazza34

I was diagnosed with this in September initially told it maybe sarcoidosis but in Nov at respiratory breathing clinic after CT scan and breathing tests Consultant said hypersensitivity pneumonitis and I was out on prednisolone 40mg for 2wks, dropping to 30mg now I'm on 20mg. I have to say they helped almost straight away with breathing, prior to the treatment I couldn't walk length of myself ad climbing stars just done me in. My oxygen levels were 84 and I was so tired all the time.

Plan for me is to reduce to 10mg prednisolone in Jan dropping to 5mg Feb until I'm back at ILD Clinic in March to repeat breathing tests and xray. If I can come off them it will then be a waiting game to see if symptoms come back.

It's s been 7 months since you posted, I hope you have improved and are doing better.

Peace and love this Christmas 🕊️

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