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… Read more

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

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… Read more

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. … Read more

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.

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

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… Read more

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… Read more

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… Read more

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… Read more

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… Read more

Hi

I am 61 years old and was diagnosed with IPF in March 2018 and went on to Ofev (Nintedanib) here in England in November 2018.

In November 2020 my FVC was 67% down from 74% in November 2019.  In October 2020 I had my flu vaccination and for the first time my pneumonia vaccination at the same time.  After the vaccination I had what I believe… Read more

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… Read more