Hi Sue

I am 85 and have been taking OFEV 150 for about 8 years with no side effects whatever. I have a mainly plant based diet and take ground flax seed and Zoe granules to avoid constipation.

One thing I might mention…Do not take blood thinners. This increases your chances of internal bleeding by a factor of 10. I learned this the hard way.

I have had IPF for perhaps 10 years and I have been taking Ofev for about 7 years.

IPF moves at different speeds in different people and Ofev has different effects on different people.

Jayme’s question has no answer except to say that statistically Ofev almost certaintly has a valuable effect. (Drug trials are not 100% reliable) I… Read more

Dear Friends

I am 83 and have had IPF for about 10 years so it is moving quite slowly and I don’t use oxygen.  I have always done exercise in one form or another.  These days I feel lacking in energy and feeling like lying down all the time.  Recently I went on a Pulmonary Rehab course and found 15 minutes of exercise every day (when I do… Read more

Hi

I have Nasal Congestion quite badly particularly at night. I put it down to Post Nasal Drip (PND) which seems to be caused by GERD. I am not sure if it is really caused by my IPF. In fact I have been told that GERD has caused the IPF. Diet and constipation seem to influence it too.

I treat the GERD with Pantoprazole and the PND… Read more

Dear all

I decided to stay on Ofev but……

On 4th Feb 2022 I was admitted to hospital as an emergency having fainted at home.  My abdomen swelled up and I felt light headed and more breathless than usual.  I was diagnosed with a large mesenteric haematoma.  This is essentially a bleed outside the small intestine into the abdominal cavity… Read more

Hi Suzy

I was told by a doctor once that most medical treatment in the UK it goes to those who press the hardest. In this case I called to doctor in February to see if he would put me on the vulnerable list last year so I could get priority deliveries from the supermarkets which he did. The vaccine priority seems to have been an… Read more

Dear all

Whopee! I had my first dose of the Pfizer vaccine last week. Booster dose on 7th Jan. My GP here in the UK put me on the priority list because I am on Ofev. Also aged 81.

No side effects whatsoever. I intend to use a N95 mask when I go out for food shopping etc because the protection is not 100%. Wondering how my younger wife… Read more

Dear Jackie ond other participants. Thank you for your posts.

I have also reduced my Ofev to 100 mg x2 per day and it helps but I am still finding it a problem.  I discontinued the Ofev for a week or so on two occasions and felt much better so I am sure it is the cause of my digestive problems.

I am currently experimenting with the following: … Read more

Hello Everybody

I was very interested to hear the comment by Taleena Koch that DLCO is affected by GERD.   I have IPF and very severe GERD as a result of gasrtric surgery and although my FVC is normal I have relatively poor DCLO  ranging eraticaly from 30% to 70% over the last 5 years.  It has been suggested that the GERD caused the IPF.

I… Read more

Thanks John and Charlene

I say my pulmonary consultant yesterday and ended up with a prescription for Rivaroxaban which is one of the modern anticoagulants.  There is an increased risk of bleeding when taken with Ofev but I decided to go for it as I think this is a better risk than getting a stroke because of A-Fib.  There is really no… Read more

I take Ofev and I have atrial fibrilation which is well controlled by a drug called Flecainide.  My GP wants me to take an anticoagulant Warfarin but my lung consultant tells me that Ofev tends to thin the blood and is not compatible with any anticoagulatio therapy because of the increased risk of bleeding.

Has anybody had experience of this?

Happy New Year Everybody!

A quick tip for wedge users when travelling:  I ask the hotel to provide 2 extra pillows then I put one under my shoulders and 2 under my head. It really works and in fact one is less likely to slip down the wedge.  I also sleep on my left side which puts the top of the stomach an inch or so higher because of the way… Read more

Hello everybody

I live in the UK and have a very unusual form of reflux because it has been caused by an operation I had 50 years ago.  Highly selective Vagotomy… for stomach ulcers before the invention of modern antacids.  The vagotomy was not selective enough and it has destroyed the functioning of my Lower Esophageal Sphincter.  The… Read more

Hi Charlene

I think we have discussed this before but others may be interested.  I used to suffer from nasal congestion and other GERD symptoms and for years I was told it was post nasal drip.  A  couple of years ago I was told that the nasal congestion was caused by reflux.  Further I was told that the reflux caused my IPF.  Now I treat the… Read more

I use codene tablets and steam.

Hi Charlene

During the 15 +years I had reflux the main symptom was post nasal drip.  Runny or blocked nose, crackly voice, sore throat and the need to clear the throat.  I was prescribed nasal sprays, salt washes etc. which did help a bit.

It was when I was diagnosed with IPF that I decided to seek Laser treatment for the post nasal drip… Read more

Hi All

It is important to note that reflux can cause IPF and other lung problems but it is not the only cause. I think it would be true to say that reflux could aggravate IPF.  Stomach acid, digestive enzymes and bile can be aspirated in the form of small droplets and damage the lungs if the lower esophageal sphincter is not working… Read more

Hi Everybody

I was surprised to see IPF described as an aerodigestive disorder.   There seems to be quite a lot of evidence that GERD is one likely cause.   In my case I am almost certain that it is the cause and now my GERD is being treated I am not sure if I need to continue with Ofev.  I am 78 and live in the UK.

I have been diagnosed as… Read more