Jeff Taylor-Jackson

Hi Joe,

I like you am a chartered electonics / electrical engineer, so one more thing we have in common with the IPF and all that.

I am really encouraged by your story and it does give me hope that I might get 8.5 years in like you. I’m not quite at retirement yet, so it would be nice to spend some of that money I have been putting away in the…[Read more]

Hi Teri,

Just to re-iterate what Bernard and others have said, NICE have approved Nintenidab for use by anyone at any stage of their progression.

It will become available on the 14th February 2022.

I suggest contacting your consultant about this.

I have already  – and I will do again after the 14th next month!

Kind regards

Jeff.

Hi Jofac,

I, like you are in England, on the south coast. I am 61 and was diagnosed in April last year. Obviously this came a shock to someone who has never smoked and is (was) very fit and healthy. Why do I cough everyday was the start of my journey. Straight away I asked if there were any drugs I could take. Short answer, no. But if my lung…[Read more]

Hi all,

I have IPF, diagnosed April 2021. I have been a vegitarian since 1983.

I am due to start Nintenidab treatment when it becomes available to me here in England February 14th.

I am shocked to read the side effects from the OFEV website:

OFEV may cause serious side effects, including liver problems, diarrhea, nausea, vomiting, heart…[Read more]

Hi all,

It is a great question. I agree with Phyliss, that since Covid hit there has been some studies into reversing lung scarring caused by Covid. This seems to have manifested itself as “Long Covid” Survivors of Covid still experiencing coughing and sore throats etc. ( We all know what that’s like, right?).

The point I’m making is that maybe…[Read more]

Hi Karen,

I feel the same sense of amazement when I see the same here in the UK. Normally they sit and smoke under a sign that says “No Smoking” or “No Smoking outside these doors” It seems to me that once you start smoking you can’t read either.

I also want to ask if in a few years they would like IPF like I have. It upsets me that they have…[Read more]

Hi all,

I cough for England every morning, 10- 15 minutes. Sometimes in the evening too.

Constantly clearing my throat, annoying to me and annoying to those I talk to.

I have just found out that I have a Hiatial Hernia, that is probably the source of my acid reflux and the IPF. I have just started to take a PPI, and I have to say, that my…[Read more]

Hi Cheryl,

Yes I have the “clear my throat” problem. It is annoying and is commented on by my co-workers.

Obviously no idea why this was happening in the past. I do have the clues now though!

Kind regards

Jeff in England.

Hi all,

I was diagnosed with IPF April 2021. So this is still new to me.

Like has been mentioned above, There is a possible link to Acid Reflux being the trigger for the ILD/IPF.

My consulant has noticed from my CT scan that I have an Hiatial Hernia, these are known to cause acid reflux.

On the nasal congestion, I now have this every morning.…[Read more]

Hi Herb C..

I am hoping you pass those last two tests.

Surely after all you have been through so far you will be accepted.

Please come back and let us all know.

I am in the UK, so I hope I might get a positive result on this. (Not applied yet, not ill enough apparently).

Kind regards

Jeff

Hi All,

Truly sorry to hear that you have had Covid AND now have PF.

I have recently been diagnosed with IPF, I have not had Covid however. One thing I have found since the diagnosis is the lack of awareness about the disease and the lack of funding for research.

I’m not saying there isn’t any, I’m just pointing out that Cancer sufferers have…[Read more]

Hi Mark,

Where in the world are you?

You mention indigestion. This could be Acid Reflux and there is a possible link between Acid reflux and IPF.

There are lots of resource around and many kind souls on this forum will offer advice and reassurance.

I am 61, and have recently been diagnosed with IPF.

Kind regards

Jeff (Poole UK)

Hi Joe,

You are right, there is a “Very small” study being carried out at Kings, they are looking into using the patients own white blood cells to treat lung scarring from covid infection.

https://www.bbc.co.uk/news/av/uk-57837432

You may not be able to see this in the US, as it’s the BBC website.

I have mentioned this at my APF group and many…[Read more]

Watch out the Cookie Monster is about!

Hi Bernard,
I too am 61 years old and in England. I have just been diagnosed in April 2021 and I am at the start of a bunch of tests to try and work out how progressive this stupid IPF is.
I had been trying to get to the bottom of the constant cough and breathlessness since December last year, with Covid and all, my GP either did not answer the…[Read more]