[Brian Sowter]

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.

[Brian Sowter]

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 would recommend taking it if you can afford it and can tolerate any side effects…I don’t have any and I get it free.

Best wishes to you, Jamie

[Brian Sowter]

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 it… which is not as much as I should) makes a huge difference and I feel much more energetic.

I have now got to the stage where I can’t do the full work out without my saturation falling to the point where I have to stop.  My question is:  Has anybody tried using a concentrator just while exercising?  Did it help?  Was it medically recommended?

I am thinking of buying a portable concentrator for when I exercise.  I would also take it when I go out shopping so I can get back up the hill to my home more easily. Might be handy for travelling too?

 

[Brian Sowter]

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 with Mometazone.

With this regime the congestion is really not too bad.

All very confusing! I guess we have to wonder and be grateful that the body works at all!

Brian

[Brian Sowter]

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 showing clearly on a CT scan.  The cause is believed to be the combination of Ofev and Apixaban blood thinner.  There have been two cases of this reaction in the UK and this was number 3.  A yellow card was issued.

Obviously I stopped both drugs and received 5 pints of blood.  Fortunately the bleeding stopped by itself. I am lucky to have survived but I am recovering well.

I dont know if my increased breathlessness is due to the incident or faster progression of the IPF without ofev bit I don’t think I am going to restart ofev or apixaban.

 

[Brian Sowter]

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 unexpected biproduct.

I think it would be worth calling the GP because the NHS process for getting people on the super vulnerable list if far from automatic. I think it depends on the individual GP/surgery how they do it.

I have not heard of any cases of Covid in people with IPF but I would imagine the prognosis would not be good. I hope you can be assertive with your GP.

Best wishes

[Brian Sowter]

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 can get it so we can go out to restaurants together. I wish I could give her my second dose.

Booked a cancellable holiday in France in May to get some sun. A bit optimistic but good to have a plan to do something other than zoom drinks.

Best wishes
Brian

[Brian Sowter]

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:  I take 1 mg ( half a tablet) of loperamide per day and a laxative every few days as required.  I know this may seem odd but several doctors have assured me it is ok as the mechanisms are quite different.  I find the loperamide seems to slow things down and it helps a lot if I avoid getting constipated which has always been a problem with me.  I have never had diarrhea but pass a lot of clear mucus and wind when taking Ofev.  I  like to eat a lot of vegitables and fruit and am not keen on doing a restricted diet even if I knew what it might be. Things are a little better with the above but I am going to try increasing the Loperamide to 2 mg (1 capsule) per day

Very interesting to read that others have tried taking a ProBiotic support.  I read that Ofev and other  Tyrosine Kinase Inhibitors upset the gastric Microbiome.  I will try this out.

I also have very severe GERD an this is treated with a mega dose of Pantoprazole (40 mg x2 per day),  A swig of Peptac at night and I sleep on my left side with my shoulders elevated. I still have to cough/throat clear in the morning.

It would be nice to have more energy but life is good!

Best wishes

[Brian Sowter]

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 wonder Taleena ( @taleenakoch ) , if you could point me to any evidence/research about GERD and DCLO?   Or is this personal experience?  I am wondering if I would get a better DLCO reading if I take extra antacids a day or so before taking the DCLO test.  I might try it next time.

[Brian Sowter]

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 significant data on which to base the decision but I certainly do not want to stop Ofev.

I was told that there are a small number of Ofev patients in the UK who do take this combination in spite of the increased risk of bleeding.  Ofev apparently affects the platelets which are part of the clotting process hence the bleeding risk. Its effect cannot be measured with the INR test used with Warfarin.   One benefit of Rivaroxaban  is that the half life is only a  few hours compared with a few days with Warfarin. It’s better this way if you do get a bleed or need some emergency surgery.  If I do get a bleed I need to stop both drugs.

 

 

 

[Brian Sowter]

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 it lies in the chest.

[Brian Sowter]

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 operation also disabled my Pyloric sphincter at the bottom of the stomach.

I recently had an impedance and manometer test and the result was a DeMeester score of 115 (the normal 2 sigma result is 14).  Se very unusually bad!

I only got a good diagnosis about 2 years ago at the same time as my IPF was diagnosed. Till then I was having dumping syndrome and all the symptoms of reflux…chest pains sore throat croaky voice, runny nose, and almost certainly, IPF.

I now practice extreme management of the reflux.  Diet, mini meals, max dose of 3 kinds of antacid, not lying down within 3 hours of eating or drinking. Sleeping on a sloping bed.  no tight clothing etc.  I take Ofev for the IPF.

I feel very well these days and my IPF has not got any worse.

I know this will be of minimal help to most people with IPF and I am sorry for that.    I just hope that good management of reflux may help somebody.

To any UK readers may I wish you a happy Brexit!

[Brian Sowter]

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 reflux with antacids, a sleeping wedge, loose clothing (I now keep my trousers up with old fashioned braces) and careful eating and drinking habits.  I can say that the nasal congestion has stopped and the IPF has not progressed measurably in the last 2 years.  The simple way to see if reflux is causing problems is to take a good dose of Lansoprazole or similar for a couple of weeks.  I felt relief in 3 days.

Brian

[Brian Sowter]

I use codene tablets and steam.

[Brian Sowter]

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 because I thought it would be nice to get that fixed if I was going to have worsening breathing problems.  Surprise surprise the ENT specialist said it was reflux and prescribed Lansoprazole. Within 2 days the symptoms largely went away though I still have the throat clearing problem.

The post nasal drip must have been caused by micro droplets of refluxate.  It seems highly plausible that the same micro droplets were being inhaled and caused my IPF.

My lung function deteriorated slowly up to that time but has not changed since I started treatment with Lansoprazole though I am also on Ofev so that does not prove anything.

I hope this helps somebody though I would hate to raise false hopes.

Brian

[Brian Sowter]

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 properly.

I have probably had undiagnosed reflux for at least 15 years and it has gradually been getting worse over this time.  I was diagnosed with IPF about 2 years ago and I have been on Ofev for 18 months. I do have some digestive problems but I am not sure if they are caused by the Ofev or not.  I am just learning to control my digestive symptoms by eating oats and oat bran for breakfast and drinking lots of water and a mainly vegetable and fruit diet.

The reflux was diagnosed a little after the IPF and now it is being treated I have minimal symptoms but the lifestyle changes have been quite severe but well worth it.  I gave 6 pairs of perfectly good  trousers to the charity shop and bought a set of looser ones.  Silly thing but it has made a difference.

GERD can cause all kinds of problems and in my experience it is under diagnosed buy the medical profession.   I think we should all be looking out for GERD symptoms and making the necessary lifestyle changes.   I found that taking antacids had a dramatic effect within two days so it was a very useful diagnostic.

As an aside I recently went to an Ayruvedic treatment holiday in India.  I had treatments and diet prescribed by a very good Ayruvedic doctor who was also medically qualified. I had personal sessions form a Yoga instructor at 5:30 am on the side of a beautiful lake as the sun came up.   Mostly total mumbo jumbo but I did enjoy it and felt much better afterwards.  I put it down to sensible diet and learning deep relaxation.

Love to all

 

[Brian Sowter]

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 having absent contractility (non functioning lower oesophagal sphincter) and no peristalsis and this is the cause of my GERD.  I have been told surgery is not an option.

I take the maximum dose of Lansoprazole and Ranitidine.  I eat only small meals, minimise coffee and alcohol, don’t wear tight clothing and sleep with my shoulders elevated.  If possible I don’t eat or drink within 3 hours of going to bed.  My FVC is 95% to 105% but I get breathless on exercise.

I no longer get heartburn, or post nasal drip so the acid  reflux must be under some degree of control but I still need to clear my throat all the time so my Larynx/Pharinx must still be affected.

My inclination is not to stop the Ofev but if my lung function is still as good in a couple of years I may do so.  It is a pity there is no accurate way to measure the progression of IPF.

I realize I am very lucky to have a diagnosis and treatment and I well know that most people who have IPF have a much harder time than I do.  I make this posting in the hope that somebody might get benefit from treating their GERD.

love and best wishes to all

Brian