[Bouleversee]

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 was something called silent or hidden reflux and prescribed me a PPI which did nothing at all. To cut a long story short, my diagnosis of IPF was not confirmed until the end of 2019 and I did not get treatment (100mg of Nintedanib twice a day) until March of this year so it is no surprise that my disease has progressed a lot since then and following a sudden exacerbation a few weeks ago I now get extremely breathless as soon as I attempt to stand up and walk, at which point my oxygen level drops like a stone and does not recover to the level it used to when I sit down and rest. I am going into the matter of oxygen but am told it won’t make any difference to my breathlessness,

I, too, suffer from bouts of coughing which can happen any time. Funnily enough, they often end with a sneeze. Perhaps I should take an antihistamine as well. I think I also have Post Nasal Drip as mucus seems to come into my mouth most of the time even if I don’t cough. I used to sleep on my right side and never coughed in bed but as the coughing starts before I go to bed I have been using pillows to enable me to sit up straight but I still cough for ages before I get to sleep so I am permanently tired. Has anyone tried Carbocisteine to thin the mucus?

[Bouleversee]

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 guidance rules, if you had the Idiopathic version of PF, they made you wait till your disease had progressed to a certain level before prescribing the treatment. I started to have symptoms shortly after my husband’s death in Nov. 2016, but was only started on a low dose of Nintedanib (Ofev) this March, by which time my disease had progressed beyond the old level and I have got a lot worse since then and can no longer do the things I used to do quite easily a year ago and there is no way of putting the clock back till research proves otherwise. I haven’t suffered much from side effects but the treatment hasn’t benefitted me and I think that this is because it was started much too late. I had already lost appetite and consequently also a lot of weight well before starting the medication

I realise that treatment options may be difference with your combined disease, which Is why I asked the question and should be very interested in your answer. I wish you the best of luck in any event.

Bouleversee

[Bouleversee]

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.

[Bouleversee]

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 of food such as the one on here of foods to avoid. It’s quite hard to think of anything I should like to eat. Funnily enough, whereas my cough was anything but dry, previously, and sounded like a severe case of bronchitis, it does seem to have become drier though my mouth cntinues to fill with mucus all the time, possibly as a result of post-nasal drip. It was suggested recently that I should take Carbocysteine to thin the sputum but the possible side effects of this are similar to those of Ofev and very offputting, and so far as I am aware it has not been trialIed in connection with IPF, I can’t see the point of confusing the issue by taking it at this juncture. Has anyone else tried it? How would they tell which drug was causing the symptoms and how do they know which side effects are caused by the disease rather than medication? I had certainly got a lot worse during the year when I was waiting to be seen which was 8 years from onset and 5 years after diagnosis.

[Bouleversee]

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, drink whole milk between doses an eat quite a lot of eggs and cheese. I don’t eat very much really, haven’t done for over a year, and am still losing weight. It will be interesting to see when/if the dosage is upped. I just wish I’d been prescribed this medication when I was diagnosed at the end of 2019 because my fibrosis has progressed quite a lot in the past year or so an since it can’t put the clock back and wont make me feel any better, it seems rather pointless now.

[Bouleversee]

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

[Bouleversee]

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 stay side-effects free before they move me up to a higher dose.

[Bouleversee]

Has anyone tried Acetylcysteine for a very productive cough?

[Bouleversee]

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 I would get some recommended recipes for when I started Ofev but haven’t come across any in the pack so far. I eat a lot of bananas, often mashed with Greek style yoghurt and honey for breakfast but I think I read that yoghurt is a no-no. Was sorry to read that green tea is also no good. I really must go and have a snooze.

[Bouleversee]

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 from Boehringer’s literature and comments on this website that various other things, including dairy (of which I consume quite a lot) can cause problems so I may have to switch to oatmilk. There will be more literature delivered with the medication so much to learn and remember, I was diagnosed end 2019 so have had to wait a long time for this medication and my fibrosis has progressed in the interval.

[Bouleversee]

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 old rule, which is rather annoying! I still don’t have a start date but in view of the possible side effects, I am to be started on 100mg twice a day to see how well I tolerate it, which seems sensible. I have been given a large pack of info regarding how to take it, including recipes, which I hope to read tonight and It is very useful reading all your posts about your personal experiences. I hadn’t realised that dairy was a no-no so will see what the instructions say about that. It will be a big blow if I have to give it up as I consume a lot of it. I’m hoping there is a certain amount of latitude and it’s different from person to person.. I’ve lost an awful lot of weight in the past year as cooking for one is somewhat restrictive and I don’t have much appetite so hope the recipes are tasty.

My oxygen levels have also deteriorated while waiting for treatment but I really couldn’t function on my own here carting heavy oxygen supplies around so will carry on as long as possible without. I’m not breathless when at rest but quickly become so when I hurry around in the house or get stressed. I’ll just have to pace myself.

Bouleversee

[Bouleversee]

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 in order to extend one’s life, so it should become, and presumably is, a matter of personal choice whether to give the treatment a try or not. One can always give up the medication if the side effects are too horrendous. It is, however, important to get the diagnosis confirmed before initiating one of the treatments. What has never been explained to me is why they were offered immediately after diagnosis to patients with PF of known cause but not to IPF patients. I can’t help thinking that cost comes into it; I believe that IPF patients tend to be older than other PF patients, unless there is a genetic link, and possibly thought not worth spending a lot of money on as they are not likely to live much longer anyway.

Another thing that intrigues me is that a lot of the medical information about IPF talks about patients suffering from persistent, hacking DRY coughs whereas mine may have been dry initially but for some years has been far from dry. I’ll spare you the details. The radiologists who have reported on my scans have not, however, expressed any doubts as to my having IPF. My own theory is that mine was caused by stress jiggering my immune system, but what do I know?

Do keep us informed. Larry.

[Bouleversee]

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 to use the Airofit device or should I get some other lung physio first. I am about to start rehab. classes after a very long wait but have no idea how effective they will be.

[Bouleversee]

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 and possibly resolved any doubts as to whether you have IPF or something else. The sooner you get a definite diagnosis and treatment, the better.

I am in the UK and was diagnosed with IPF in late 2019 and have still not been prescribed an anti-fibrotic because IPF patients (unlike other types of PF) had to wait till their disease had progressed to a certain level and although this rule was changed and from March 2023 they were supposed to qualify for treatment after diagnosis, this has not been fully implemented (lack of resources) and I am still waiting, Needless to say, my fibrosis has got worse since diagnosis and they won’t be able to put the clock back, but there we are. Definitely worth making a polite enquiry in my opinion. Good luck!

[Bouleversee]

<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 cough was dry but now it is very productive and choking and makes my life hell. I have had no treatment as yet for the IPF as in the UK with IPF you had to wait till it had progressed till a certain level and although that guidance was changed last November and in theory IPF patients are, like other types of PF, now entitled to Ofev once diagnosed, in practice that is still not being implemented by the team I would have to be referred to, due to lack of resources. </div>

Am I correct in thinking that other countries prescribe Ofev (or other antifibrotic treatment) as soon as diagnosed? If so, how much difference does it make?

I note the reference to the immune system which, I think is affected by Vit. D deficiency. When I asked for blood tests (before I was diagnosed) because I was feeling so fatigued, the results showed I was very seriously deficient in that and was put on a crash course. Johns Hopkins have established a connection between Vit D deficiency and lung diseases inter alia but I don’t think it has been proven which is cause and which effect.

When I looked into the various lung diseases I might have before my diagnosis, I thought sarcoidosis might be a likely candidate but it has never been mentioned by my consultant.

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[Bouleversee]

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, IPF patients were made to wait for treatment till their condition had worsened to a certain degree. I think the cost of treatmnt was behind this. After dutifully shielding during the pandemic, I actually caught Covid waiting in the queue for my booster Covid jab. I wasn’t particularly ill but I suppose my recent exacerbation (I am now very breathless the minute I stand up, let alone try to walk and I have lost a horrendous amount of weight because I have no appetite and a very dry mouth and can’t swallow dry food) could be Long Covid. Whatever, I need to get my affairs in order!