Trying that one and simply blowing up balloons and playing harmonica a bit. All much harder recently

The breathing exercises become so much more difficult and stressful as the IPF progresses.  Try for as long as you can.

My husband is 83; finally diagnosed with IPF  3.5 yrs ago & been on Ofev for 18 months. He’s 6ft and down from 13 stones to 10 st 5 lbs with severe muscle mass loss. He has a cough and runny nose which doesn’t help his reduced appetite from the medication. Resultant lack of energy means reduced exercise which is not good. We live day to day… Read more

My husband has suffered severe weight loss due too the ofev. He has had numerous tests to rule out anything else so we are left using Ensure and tempting the appetite as best we can.  He takes 1 Lorazepam each morning and is currently not having diarrhoea problems. All best wishes to everyone suffering with this awful disease.

I have put a reply out there but unfortunately not here. Hope you can find it on the Forum. All best wishes.

My husband was diagnosed with IPF nearly 4 years ago and has been on Ofev 16months. His starting FVC was 65% but is now 49%. They say Ofev will be withdrawn when lower than 50% so maybe at next appointment? He takes 1 Loperamide early every morning which helps avoid diarrhoea. He suffers with severe rhinitis and an intermittent cough.  He… Read more

Thank you Bob.  Spoke with the Dr today and will be reducing dosage next week.

John

I hope you continue to manage the Ofev without the awful diarrhoea.  My husband had been taking it ok for 9 months but now is getting the diarrhoea at some point every day or so.  He takes the Loperamide to help this side-effect but has lost a significant amount of weight and so his appetite has suffered.  Good luck with the medication.

Over the last 3 years I realise I have become my husband’s carer first and wife second which makes me sad sometimes. I am very lucky because he’s so grateful for my support and I try not to feel cheated out of the fun  and time we had planned  together; we take each day as it comes, helped probably by the COVID restrictions we’ve been under for so long.