Dear George,

So very sorry to learn about your problems. I am running a parallel path with you.

Early diagnosis over 10 years ago, so long term gradual loss of abilities. Now on O2 full time. The concentrator on full 5 litres overnight, and supplemental up to 8 during stress during day.

I too am a free thinker. My thought is, it is not the dying,…

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Thank you David.

You comfirm the information from a friend with a medical contact.

I am looking at Berberina (?) The material recently featured on this site and the Chinese tests on mice. It is available on vitamin suppliers sites.

I’m at the grasping (gasping) at straws stage!

Thanks again,

Regards to all contributors, Joe

I have had an enquiry from a fellow sufferer about Linosus. Has anyone used this treatment? Any comments?

The link:-

Lignosus | Best Natural Respiratory Health Supplement

on__23853078900190174&utm_term=TOF | DCT | CBO | EU | 107…

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I did not understand the mnemonic UIP, so looked it up and Wiki gave me this:-

The cause of the scarring in UIP may be known (less commonly) or unknown (more commonly). Since the medical term for conditions of unknown cause is “idiopathic”, the clinical term for UIP of unknown cause is idiopathic pulmonary fibrosis (IPF).^[2] Examples…

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Hi Harold, also Ray,

I have been on OFEV since 2015, over 8 years. Started on the 300 mg daily dose, but after six months due to G.I. problems reduced to 200 per day. I have been on that since, but have always had to work at keeping my GI tract under control, lopermide hydrochloride (Imodium?) as necessary. This post is most timely as for the…

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Hi Gavin, I feel quite distressed on your behalf by the reapidity in tne progress of your symptoms, especially considering your age. I am old, and have a slow form of IPF, but now reached the distressing oxygen debit zone. I have just had a consultation with a respiratory nurse on breathing techniques. I have found it helpful in minimising… Read more

Hi Ehud,

Essentially I agree with you, cause and effect.  As in an experiment. I can only wish you well.

Regards to all contributors,  Joe.

Hello Ehud,

Again with the precursor that I have no medical background, I understand that we have two blood pressures. The external which is measured every time you attend a medical facility.

The second is the pulmonary loop, driven by the right ventricle.  Difficult to monitor. I understand as our lungs capacity shrinks this ventricle… Read more

<p style=”text-align: left;”>Hi Steve, I missed the paper that you refer to, I only caught the study on mice that appeared on this site at the end of February (?). Is it the same paper or a different test. If different do you have a link.</p>
I have will have completed 3 weeks on my trial next Monday. Presently taking 75 mg coated tablets 3… Read more

Hello all,
I posted a comment on the use of aspirin on the IPF News ‘Research and development’ site, saying that I was going to start with low dose, 75mg, gastro resistant tablets.
Being aware of the Gastro-intestinal (GI) risks of taking aspirin in as a prophylactic, I thought, ‘is there another mechanism of administration’.
After some… Read more

Hi @Christie-patient,
My wife, English, had and still has difficulty with local dielect verse, so I can imagine your struggle with Scottish accents.
Here is a piece of Brown’s work. Something we were obliged to learn ‘off by heart’ as 10 year old primary school pupils. Hope you all enjoy, get somethkng from it. Joe

From the narrative… Read more

Hi Christie,
You interest in poetry strikes a chord with me. However, I will add a couple of personal limitations. Whilst I am reasonably articulate, I cannot write reasonable verse. I have ideas but have a blockage in constructing verse or poetry.
I do not identify with clever poetry, i.e. that writing which is gramatically, or word wise… Read more

Thanks Chris for the link.
I zam not the best at deciphering statistics! But do I get the comparason that those on treatment effectively maintained capacity, sort of + or – a bit about their base lines? Those on placebos significantly continued their decline in FVC etcbelos their base lines?
Thanks,
Joe

Hi Chris, Your post is most interesting. I feel almost certain of the gene mutation / aberation as my sister 11 years my senior died of the complaint at the age of 85. Possibly our grand father on my mothers side died prematurely aged 41 of an undefined lung condition.
An article that I read referred to the MUC5B mutation as a possible… Read more

Hi Chris, Your post is most interesting. I feel almost certain of the gene mutation / aberation as my sister 11 years my senior died of the complaint at the age of 85. Possibly our grand father on my mothers side died prematurely aged 41 of an undefined lung condition.
An article that I read referred to the MUC5B mutation as a possible… Read more

Hi All again,
I apologise if my last message sounded rather morbid. It is a record of my experience to date.
One wonders about our vulnerability, what caused this disease in us? With my sister having it, we were 4 siblings, just 2 of us got it. Was it an inherited mutation that gave us a predisposition, maybe the MUC5B gene mutation?… Read more

Hi All, I am not sure that I should add to the contributions already submitted. However, here goes:-
1. I suffer from IPF diagnosed in 2013 now over 9 years. An early diagnosis following a bout of pneumonia caused by a virus that both my wife and I suffered following a visit to a theatre! Incubation chamber!
2. My sister 11, years my senior, was… Read more

Hi Wesley,
Sorry, but it is necessary to be a bit of a pedant. Time and date, next Thursday is not good enough.
To be constructive, could a text summary be produced of the recommendations that may have surfaced.
As a long term sufferer, 9+ years, and one who is in the end game, I would be interested.
Keep exercising as long as possible,… Read more

Gene variations or mutations involved in IPF.
In the UK when one signs up to permit any samples taken to be used in research, you fail to understand that you will not get any personalised feed back. The only information received will be that pertinant to your treatment. So, monitoring the progression, and the prescribing (in my case one of the… Read more

Hi Steve,This is one site referring to piceatannol:—
https://pubs.rsc.org/en/content/articlelanding/2016/fo/c6fo00685j
It suggests that it has greater potency than reversatrol. BUT.??
Regards to all,
Joe

Hi Steve,
It seems that we are at about the same stage. My O2 sats are about 92 – 94 at rest (creeping downward). Likewise, puffing at the top of the stairs. Have concentrators in living room and bedroom. Use as and when. Portable O2, which my wife carrys for use uphill, or against the wind. We go out for 20 to 40 mins EVERY night, except windy… Read more

Hi All, The message to eat healthily is loud and clear and one which I have stuck to, despite the advice to avoid fibre to compensate for OFEV effects on the digestive system. I also take a cocktail of vitamins and nutriants. Keeping on exercising is vital, only walking slowly now.
People have advised taking various alternative therapies. I… Read more

Hi Nina,
I will say hello.
IPF has been described as a cruel complaint. The progressive nature slowly or quickly robbing one of your physical abilities. We all, on this site, probably wonder what caused the investigation into your health that revealed your diagnosis. Mine was a slow recovery from a bout of pneumonia (that affected my wife… Read more

Hi Natalie, I agree about exercise. My feeling is to try (against the odds) to keep going. A couple of years ago I used to talk about walking up the local headland from the sea side promenade. NOW! I can do it in very short bits with several rest stops, even with my wife pushing, hand in the middle of my back! Result, we do not do the… Read more

Hi Natalie, and other thread contributors.
I live in the Isle of Man, centre of the Irish Sea.
Because of its central location it was an ideal site for a Hyperbaric Chamber. In the ‘good old days’ this was a government facility to provide urgent support to the maritme industry. When this was deemed unnecessary the local leisure industry,… Read more

Hi Jim,

You ask most pertinent questions. It is accepted that there no cure for our complaint, and the extension to our life by taking either of the two treatments against the side effects is questionable.

I started a thread asking for experience of the transfer from OFEV (nintedanib) to Esbriet (Pirfenidone). I received many replies… Read more

Dear Jacqui,

I anticipate that you will get lots of support on this site, much of it with better knowledge than I can offer.

First, I would suggest getting medical advice for the pain / discomfort that your Mom is experiencing. It is, I believe, known that IPF causes stress on the right ventricle of the heart.  Does this cause… Read more

Hello Charlene,

A quick note, I was diagnosed with IPF August 2013, my sister in 2015. But our daughter diagnosed with sarcoidosis, following the birth of her two children, about 2012, aged 37.

As I have said on previous threads, I would like to know more about familial / gene links. My daughter ‘is my daughter’, she inherited my curly ears… Read more

Hello all,

Well just to update you all on my progress on my transition to Esbriet. There was a week or so as I ran out of OFEV, and delivery of the Esbriet. Then the two week build up to the full dose. I noted a reduction in my physical ability over the period, as monitored by our 30 – 45 minute evening walks. Not scientific, but aware that I… Read more

Hi All,

Especially, Patrick, Linda, and Margaret, and your conversation on ‘silent reflux / GERDS’, barium swallow tests, and hiatus hernia.

When we are diagnosed it is natural to wonder what caused this disease. I have said it before, I blamed my time working in small Diesel driven Power Stations. Much vibration, creating dust, probably… Read more

Hi Cecil,

Like you I started Esbriet (pirfenidone) 2 weeks ago Monday, so have just had my 3rd day on the full 3 x 3 – 267 mg dose. At present I feel lack lustre but not dizzy or nauseous. GI problems much better, but not quite back to normal.

A quick summary of my position. I am the person transitioning from OFEV to Esbriet due to weight… Read more

Hi Sybil,

Most interesting to hear from you and your experience on the nebulizer trial. It sounds rather like the two approved treatments for IPF, it is difficult to know how effective they are, or have been.

I have been on OFEV for almost 7 years (living with side effects) and suffering a gradual continuous decline in my physical abilities.… Read more

Dear Julie,

We offer our sympathy at the loss of your father. Our thoughts and prayers are with you at this time.

Kind regards, Joe

Hi Christie,

I have just spotted your thread on ‘IPF Awareness’. So will follow you there. Jeff remarked that he is a, “research champion for the APF here in the Wessex region”.

Jeff, what does that mean? Is it a mechanism that raises awareness, and publicity for IPF sufferers?

I got annoyed with the BBC radil the other day as it had a… Read more

Thank you Terrance for writing about your experience on Perfenidone.  I really do not want to feel ill, or debilitated. I did ‘off’ at times on OFEV (ninredanib) but now, other than bowel problems and weight loss. I have adapted, and tolerate it well now, admittedly on the lower 100 mg  dose.  It has been the weight loss that has triggered the… Read more

Hi Jeff,

Thank you for your contribution, it did make me laugh, ‘engineers small brain’. I was / am an electrical engineer, now retired, the years of study and training does give us a wide understanding of mechanisms, perhaps even biological! Like you, when diagnosed I was as fit as a flea. Never smoked, and at the age of 70 was getting out… Read more

Hi Tim,

Thank you for your very informative email. I will take your advice on taking the medication mid meal. I am very concerned about the prospect of nausea. This was also suggested by other participants. I feel easier about the sun burn risks. Living at 54 degrees north means a weak sun strength most of the year, with longer days in… Read more

Dear Friends,
Thank you all for sharing your experiences of Esbriet with me. It has certainly reduced my fears of the side effects.
Dave, Brian, Malcolm and Russell, your positive comments regarding sun burn risk and the lack of nausea give me confidence to follow the recommendation of the Aintree IPF clinic in Liverpool. They offer me the… Read more

Hello to all you kind folks in this IPF community.

I thought that I had ticked the ‘Notify Me’ box, but seemingly not. If I had done so I would have replied to each of you as the emails were received.

I am putting this quick response on, to say a grateful ‘Thank you’ to all your very helpful replies showing the positve side of Esbriet. I… Read more

Hello Forum members,

I have been on OFEV Nintedanib for six years and eignt months. I was quite quickly reduced to the 100mg capsules due to the usual bowel problems. Over the years my weight has declined, from my healthy 161 / 166 lb bracket to a low of 136 lbs. I had stabalised for a long spell at 148 lb, until last February when following… Read more

Hi Martha,

Like you, I had a preliminary diagnosis of IPF by X-ray and CT scan. That was in  August 2013. Under the NHS system in tne UK, referrals and consultatios tend to proceed at a pedestrian pace. I was offered a biopsy about a year later.

I was, as you are, faced with the choice of  leaving well alone (acceting the diagnosis) or going… Read more

Hello everyone,

A couple of notes:- my local care team do not seam to understand that the bowel troubles on OFEV are variable. Periods of relative stability ( Oh! Joy) interspersed with periods of discomfort & diarrhia. Also weight loss.

Their latest proposal is to swap me onto Esbriete (Perfedinone). I feel a reluctance as nausea seems to be… Read more

Hi Brian,

In principle I agree with you, but when you feel that time is running out, straws start to look very attractive!  There have been so many miricals in the treatment of cancer in the last decade, one feels that there will be a breakthough in the treatment of IPF soon. But how soon?

Cheers (keep smiling), Joe

Hello contributors,

A hospital (Ashford and St Peters NHS ?) in the south of England is apparantly involved in a trial of N115 for COVID 19 patients. I made an enquiry from the lead doctor, but as of the present I have not received a reply.

My situation is 8 years from diagnosis, 6 years on OFEV and realise that it may be too late for… Read more