[Bernard McKenna]

Hi Everyone

I am in the UK and what David above states is correct at present.  However if a person comes off Nintedanib (OFEV) before reaching the 50% FVC and switches to Pirfenidone (Esbriet) they can continue on Pirfenidone which is happening with myself.  I think it may also occur even if you go below 50% that you can switch to Pirfenidone (Esbriet).

The National Institute for Health and Clinical Excellence (‘NICE’) is deciding this month (January) whether people can still continue to receive Nintedanib (OFEV) if their FVC goes below 50%.

As my current decline has been quick I am also going to be evaluated for transplant but the number of transplant operations I understand have declined because of covid.  In the Republic of Ireland they sadly recently had a man who came to the Mater Hospital in Dublin for his transplant and the lung was ready for transplant but there were no intensive care beds because of the number of covid patients in ICU so the transplant did not take place.

I hope this helps.

Best wishes to all

Bernard

[Bernard McKenna]

Hi Phyllis

The current trial is for a nebulised form of Pirfenidone (Esbriet) not Ofev (Ninedanib).  They cannot turn Ninedanib into a nebulised form but have done so with Prifenidone though it is still in the trial stage but I understand looking good.

Best wishes to you Phyllis, Joe  and everyone and a Very Happy New Year to all.

Bernard

[Bernard McKenna]

Hi Marg

I too am an NHS patient.  I was sent for a CT scan at the beginning of December 2021 with dye injected because my FVC had declined quickly and I too had lost weight.  The CT scan was with the addition of a dye to contrast the areas of the lung where there is fibrosis and to show up if there was anything else going on.  I also had blood tests.  Thankfully it was just the progression of the disease and nothing else which was my worry.

60.4 kg is only around 9 stone 5 pounds so your husband is very underweight for his height.  As I guess as your husband is attending Aintree hospital you are near Liverpool perhaps you it might be worth seeing if he could transfer over to Wythenshawe Hospital in Manchester as its only around 30 miles away.

I am moving from the Churchill in Oxford to Wythenshawe as I work during the week in Stockport near Manchester and Wythenshawe does have a good reputation.

Very best wishes to you both.

Bernard

[Bernard McKenna]

Hi Jofac

I am 61 yearts old and live in the UK but am Irish and like you we have very fair skin.  I have never had a sun tan and just go red.

I am moving in the New Year from Ninedanib (Ofev) to Pirfenidone (Esbriet) and I am aware of the side effects but I have to change as my lung function has declined and Ninedanib no longer works for me.  There is a clinical trial in the UK and probably also in the USA of a nebulised form of Pirenidone which does not have the same side effects as it goes stright to the lungs but I have been refused acceptance on the trial as there is no proof that I not not be able to cope with Pirfenidone in capsule form.  There is no placebo in the trial.  To me a nebulised form is better as none of the medication is wasted by going to other parts of the body it is not meant for including the skin.

I have been told I will have to take Lansoprazole whilst on Pirfenidone to stop getting sick (what you call nausea) but I already take a 30mg Lansoprazole each day for the same reason whilst on Ninedanib.  I will have to wear a a high factor 50 sunscreen but it seems the main areas to cover up are my neck and the backs of my hands.   They have also told me not to take grapefruit or grapefruit juice and to avoid well done red meat.  Neither of which are any problem.

With very best wishes Bernard

[Bernard McKenna]

I frequently cough after a bowel movement otherwise it is in the morning just after getting up or if there is a change in the weather.

[Bernard McKenna]

Further to my earlier postings the report on the use of Esomeprazole is from Baylor College of Medicine, Houston, Texas.

[Bernard McKenna]

Linda I do not have GERD and am taking Esomeprazole for its anti-fibrotic effect.  The report from Baylor University states at its conclusion;

‘Accordingly, the dose of esomeprazole and other PPIs need to be adjusted to achieve plasma concentration of 50–100 μM in order to reliably regulate processes involved in lung remodeling. The standard antacid doses of PPIs only achieve plasma drug concentrations of 10–20 μM. However, higher doses of PPIs that can achieve antifibrotic concentrations can safely be administered to patients’. 

The report focuses on the benefits of Esomeprozole not any other PPI.

All I am saying is that it works for me I feel better now than I have done for at least the last year.

[Bernard McKenna]

Hi Everyone

Further to my post on 13th July 2021 I can now confirm that Esomeprazole  is working well for me.  My coughing is at least down 80%, I have renewed energy and can walk 2 miles and more without getting breathless.   I could not do this 4 weeks ago before I started taking Esomeprazole.   I can even tolerate foods that before I was reluctant to eat and my nausea and upset stomach that I had occasionally from taking Nintedanib (Ofev) 150mg twice daily has disappeared.  I increased my dosage of Esomeprazole to 20mg x 3 from 20mg x 2 a day but am going to try 4 x 20mg a day after now reading the study report from Baylor University in Texas.  The link to which is https://journal-inflammation.biomedcentral.com/articles/10.1186/s12950-021-00284-6

Whilst the report is technical the conclusion at the end is what is important.

[Bernard McKenna]

Hi John and Everyone

Yes I was so excited by news about Esomeprazole that I rushed to the pharmacist in Galway, Ireland where I was on holiday from England and got some.  The pharmacist sold it to me under the brand name Nexium and I am taking 20mg twice a day.  Our local pharmacist in Oxford even sells it cheaper in their own brand range but it is not expensive and can be bought over the counter without a medical prescription.

I have only been taking it since the end of June 2021 and therefore it is too early to notice any improvement but I am maintaining hope that there will be a cure for IPF in my lifetime that I will benefit from.

I was diagnosed in March 2018 and have been on OFEV (Nintedanib) since November 2018 but my FVC has gone down over time from a high of 72 to 60.5 and at 61 years old still working full-time.

God bless you all

Bernard

[Bernard McKenna]

Hi Jeff

I had my 6 monthly lung function at the end of April.  I had to point out to the secretary from Churchill Hospital in Oxford where I attend that a phone appointment was no good and I should have a lung function test and the letter from them stated I was to have this.  After she checked with my consultant I was then sent for a lung function test and then had a nurse led phone appointment.  My FVC had reduced to 61.5% but they have decided I can stay on Nintedanib (Ofev) and my meeting with the consultant is in November as I only see the consultant once a year.  They have sent me for an encardiogram for my heart then rang me last Friday to state that I should have had blood tests and I needed to arrange these urgently.  I know in particular they look to see if the drug is affecting my liver.  Apart from putting me on Nintedanib in November 2018 and keeping me on it they don’t seem to do much.  I have put myself forward for clinical trials both at the Churchill and the Royal Brompton in London but I am yet to hear fully from them.   There was to be a clinical trial on an anti-cough therapy at the Churchill starting in May this year but we are now in June and I have not heard further except after a reminder they have told me that the Doctor leading the trial is on holiday for 2 weeks but I am going to chase this up again.  Prior to being with the Churchill in Oxford as I work near Manchester I attended Wythenshawe Hospital there but found the consultant to be very abrasive and not friendly in her attitude.

I don’t have a dry cough it is a productive cough and it is mainly in the morning upon waking up and for some unknown reason after a bowel movement.  As my cough is productive after 2 attempts to speak to a nurse about this I was told to contact my GP (MD) to get prescribed Carbocisteine 375 mg 2 twice a day.  It does not stop the cough but eases getting phlegm up.

I hope your lung function tests go well.

Best wishes

Bernard

PS I like the PITA bit.  I may yet have to try it!

[Bernard McKenna]

Hi Jon and Bill

Many thanks for your replies they have helped me a lot.

My General Practitioner (MD) just arranged the flu vaccination, they do everyone over 55 years each year in the UK in vaccination clinics and I asked for the pneumonia vaccination as my husband received it the previous year as he reached over 70 year old so having IPF I asked for it and they just gave it to me at the same time.   My consultant (pulmonologist) just said that ‘perhaps it was not a good idea to have them together’ when I mentioned it.  In the UK they state the pneumonia vaccine is once for life so I don’t think they will give it to me again.

It is good to know that people have the same experience of bloating with IPF and with a productive cough bringing up phlegm as I hear so much about a dry cough and mine is the opposite with clear phlegm.

I am going to endeavour to exercise more and go for walks which has been difficult here in the UK as we have been in lockdown due to high covid rates but they have dropped like a stone due to the vaccine and we come out of lockdown on 12th April.  I’ll also drink more water I do drink a lot of tea with milk and soft drinks but may be water is best before I go to bed.

We have a national health service so if a person is over 60 years old all medication is free and below that there is a not very high fixed charge per item but Ofev is free regardless of age but unfortunately whether you receive it depends on your FVC and how that is maintained.

It is great to hear Bill that you have survived IPF for at least 15 years.  The first doctor I saw which was in fact a private pulmonologist so I had to pay to see him just told me to go for a CT scan and gave me an old leaflet about IPF which he pulled from his top pocket to read whilst I waited for the scan.  I read it thinking nothing of it until I read it was a terminal illness with a life expectancy of 3-5 years from diagnosis.  He never even mentioned it to me.

I am trying to stay positive about life but just being able to share experiences is a great comfort.

Bernard

 

[Bernard McKenna]

Hi Everyone

I am in the UK and was diagnosed with IPF in March 2018 and have been on Ofev since November 2018 150mg twice a day. For those of you looking for Ofev outside of North America in the UK and Europe it is called Nintedanib and the UK National Health Service obtains it from Boebringer Ingelheim in Germany. I have been prescribed it with Lansoprazole Gastro-Resistant Capsules 30mg to be taken in the morning with the first dose of Ofev. Lasoprazole is a proton pump inhibitor which reduces the amount of acid that the stomach makes and helps to ease the side effects of Ofev.

I try not to have too big a meal in the evening to avoid feeling nauseous.

Thanks to reading posts on your forum I am also taking Green Tea Extract which I think helps. To boost my immune system though I am ‘shielding’ in case of covid whilst I await the vaccine I am taking vitamin D.

My FVC (lung function) has remained stable at 68% for the last 2 years and I believe that this is due to Ofev.

I hope this helps and all I can say is that Ofev works for me.

Best wishes for everyone

Bernard