I agree wth silentwarrior. I had some of the effects attributed to the medication (fatigue, loss of appetite and weight) long before I was prescribed Ofev (Nintedanib) in March 2024,(over 7 years since reporting symptoms to GP and over 4 years since diagnosis was confirmed) . My sats levels have gone down as have my lfts. In England,…

Read more

What is Resistive Type of IPF? First time I have seen this mentioned. I am 87 and had the first symptoms of IPF not long after my husband died in Nov, 2016 when I started sitting in his reclining chair and leaning back made me cough. The doctor I saw about this said it would be due to reflux and when I said that I never got reflux said there…

Read more

Where do you live.Jeff, and why are you not on treatment for your PF? It can have nasty side effects but if it slows the progress of the disease and you can tolerate them or indeed don’t get them, if you can get it prescribed, it is worth trying it as soon as possible.

Having said that, I live in the UK and prior to a change in the NICE…

Read more

I haven’t been to the dentist’s for ages but am planning to go soon. I m not on oxygen yet but I am a little apprehensive because I start to cough if I lean back in a char or in bed.

Thanks to all for your helpful contributions. I am still tolerating the twice daily 100 mg of Ofev pretty well, with no diarrhea or nausea. I don’t have much appetite and I am losing weight and feel tired all the time but that was the situation long before I was finally prescribed Ofev. What does make m feel nauseous is looking at pictures…

Read more

I have now been on 100g twice a day or just over a month. I take it in the middle of a meal, So far only 1 near accident, quickly over, but then I have for some years had a tendency towards constipation; now no long take a laxative. I have porridge with semi-skimmed milk or Greek style yoghurt and mashed bananas and honey for breakfast,…

Read more

I swallow my capsule half way through my meals, by the way.

Do I gather that the side effects, notably diarrhoea, don’t start straight away but only after being on OFEV for quite a while? I haven’t had any side effects yet and was feeling very lucky but I am only taking 100mg initially and only started on Thursday so maybe too soon to draw any conclusions. I wonder how long I will have to…

Read more

Has anyone tried Acetylcysteine for a very productive cough?

Whoops. I meant 100mg.

Started Ofev this morning and no ill effects so far except that I feel even more tired than usual but that’s probably just because I got to bed very late. Not enough hours in the day for all I have to do. I skipped my usual laxative last night for obvious reasons but am now wondering whether I should take it. I was told…

Read more

My first prescription of Nintedanib/Ofev (100g twice daily, to be increased later if tolerated) will be arriving tomorrow so it has been very useful reading all your comments. My hospital Pharmacist recommended ginger and the only things I was told to avoid were grapefruit, grapefruit juice and marmalade made with Seville oranges but I see…

Read more

I am 87 and in the UK where if you had IPF you had to wait until your fibrosis had progressed to a certain level before getting treatment. Although that rule was changed in Nov. 2022 and in theory IPF qualify as soon as diagnosed, supposed to be implemented from March 23, I have only just been seen by the ILD team and now qualify under the…

Read more

I thought it was common knowledge that the anti-fibrotic treatments didn’t cure existing fibrosis and thence improve quality of life but the purpose was to slow the progression of the disease and thence extend life so it comes down to a decision as to whether the side effects, which don’t affect everyone apparently, are worth putting up with…

Read more

Gosh, the Airofit is indeed expensive. I started off with a dry cough (many years ago now) but since diagnosis it has developed into a horrendous, very productive cough, to the extent that I can no longer do the lung function tests, where you have to breathe out slowly, without coughing and my diaphragm wobbling. Do you think I would be able…

Read more

I don’t see why your pulmonologist should take offence if there is still some doubt about whether you have IPF or not after a CT scan. How long ago was that? You could say that you have just read this interesting article (link) and wondered whether he was considering using this new facility to see if it shed any more light on your situation…

Read more

<div>David’s story is very interesting because I had double pneumonia and nearly died after falling into a river when I was around 7 but when I was diagnosed with IPF at the end of 2019, getting on for 3 years after I had reported a persistent cough to my GP, by which time I was 83, I was told there was no connection. At that time, IIRC, my… Read more