pure emphysema and inhalers

[gaffers]

I have severe but non obstructive emphysema'

I had a full spirometry earlier this year and my fev1 was 108% my fev1&2 ratio was 60% but my dclo(gas exchange) is at 34% I am told that i simply do not have enough lung surface area left to improve my oxygen exchange.

I get very sob and my nails often get a blue tinge when I exert myself I have stopped using inhalers as they do not deem to help in any way and tend to cause more mucus production, and give me more problems than benefits. am I unwise to refuse medication?

[Oshgosh]

I don’t know the answer,I have Non Specific Interstitial Pneumonia 4 years ago.

My Dlco also varies,I’m sob on oxygen when mobilising.

When I was first diagnosed the ILD C onsultant asked me why I was on such high dose inhalers for asthma.

I replied I didn’t know,I’m not a Dr.

So I agreed to work with my respiratory nurse,she prescribed lower dose inhalers, etc. everything was fine for a few months.after about 4 months I started to have asthma symptoms,so I went back on the higher dose inhalers etc.

I told the nurse,I didn’t mention it to the consultant.

I just carried on as usual,as you do.

I had a similar experience with Mebeverine,so I’ve now given up trying to reduce my tablets."

Take care in this cold weather.

[CDPO16]

I can't answer your question. No one here is medically trained, we all have lung disease or care for someone with it. All I would say is that we can all accept or refuse treatment. Perhaps you should discuss your feelings with your doctor or nurse. I often wonder how much good my inhalers are doing but also wonder if I would be worse without them and so I continue to take them.

[eleanordigby]

This sounds like the perfect subject for a chat with one of the respiratory nurses on the helpline number shown above. They’re brilliant!

[Usedtodance]

I’ve never heard of anyone with lung disease have a Fev1 over 100% ?

I should contact the helpline team on here? And of course your consultant.