Jeff Taylor-Jackson

Oh that sounds jolly doesnt it? I think I will give it a miss. Also scored really high on rotten tomatoes too.

Jeff

Hi Chuck,

Hang in there mate, I agree 100% with the last bit of your comment.

Keep the faith, trust in the good work the researchers and clinicians are doing right now to find a cure for us all.

Jeff.

P.S. I also did the same, I read the article and started taking 15mg of Zinc a day. My consultant knows about it, she is of the opinion “it cant…[Read more]

Hi Mike,

Dont be discouraged by the response. Not all clinicians are as narrow minded as yours appears to be.

There is some great reseach going on, including some lines that your pulmonolgist may never have heard about or even considered. I didnt use “Dr. Google” I read the article published in a medical journal about Zinc pathways.

Dont…[Read more]

Hi Kim,

Yes me too.

After I was diagnosed I had a number of CT scans. That’s when they identified the hernia.

There is a theory (UNPROVEN) that this may be the trigger for my IPF. Breathing in the acid and all that.

I thought that everyone got indigestion, or as I have now been rightly informed, acid reflux. Asking my colleagues at work – all…[Read more]

Hi All,

Aside to all the known drugs that slow progression for us all, there is some encouraging research developments.

I dont profess to understand it all, but if you care to Google “REMAP-ILD” then hopefully you will see what is happening right now.

REMAP is a reconfigurable (that’s what the R is for) method of speeding up drug trials.

It…[Read more]

Hi all,

I was diagnosed April 2021. I am now 62 years old.

I am a chartered Electronics engineer. I have a fantastic employer who recognises my condition and is fully supportive.

My everyday work was a design based, desk based job, until I have any production, testing or qualification activities to do, meaning I run around the shop floor…[Read more]

Hi Charlene,

I can relate to this.

I’m not sure what it is down to, but the bottom line is my IPF. I often wake in the night, once, maybe twice.

I also wake with a headache due to me feeling more tired than I did when I went to bed.

I have had one test for sleep apneoa, that showed that I dont have it. I’m not sure one test, over one night is…[Read more]

Hi all,

Throughout this thread it seems that there is a feeling that any research will be years before any results or drugs will be available.

That certainly is true if the current method of clinical trails is undertaken.

Google REMAP ILD

Remap stands for Randomised, Embedded, Multi-factorial, Adaptive Platform.

REMAP was used to bring a…[Read more]

Hi John,

Throughout history, there have been people who disregard new research. Normally it’s because it’s outside of their field of expertise. Frank Whittle – Jet Engine, Isambard Kingdom Brunel – Suspension Bridge, Screw propellor, I could go on.

Hedy Lamarr – yes the film star, went to the Navy saying she had developed a method of scrambling…[Read more]

Hi all,

I mentioned this to my support group. One of our members actually wrote about Zinc and it’s properties  as part of her PhD thesis and was very excited about it when I mentioned the article.

The chair also said that the research was “Very encouraging”.

I said that I had rushed out and bought a bottle of Zinc from the Chemist and I am…[Read more]

Hi Charlene,

I regularly bring articles of interesting research up with both my consultants, and with the Clinical team at the APF Charity (UK).

Generally the response is “dont believe everything you read on the internet”.

I get that, but I also get frustrated at the lack of interest in another line of research, if they are not following  that…[Read more]

I am going to take it straight away.

I can also use it to stop my garden gate from rusting! 🙂

Really interesting article and seriously; we need some good or encouraging news.

Jeff in England.

Hi Charlene,

I am 62, and still working full-time. I am a chartered electronics design engineer. I work from home and my employer has bent over backwards to help me to continue work. I dont want to go back in the office. It has advantages and disadvantages to WFH, when my designs are being tested or qualified, I dont get hands on to fix or chase…[Read more]

Hi Christie,

I think the one thing that really rattles my cage is that I have never smokedand I have IPF. I always thought of it as a monumental waste of time and money, to stain your teeth, make your breath smell like you have been eating cow dung and your clothes and house smell like the bottom of a sewer. So for a non-smoker to get IPF is the…[Read more]

Hi Jackie,

I am in England. The sad thing is, I tried for about 6 months – yes you read that right – six months to even get the GP surgery to answer the phone. They only operated the switchboard for an hour, 9 am to 10 am, so at one minute past nine, you may get placed in a queue, if you were fourth or more in the queue, then forget it – your…[Read more]

Hi Darcy,

Everyone is unique, everyone is different.

I guess you are in the USA? Here in the UK OFEV is available free on presciption only if your consultant recommends you take it. OFEV or <span class=”kwd-text”>Pirfenidone</span> has side effects that may not suit you. I have just started taking OFEV and so far no side effects – so I am…[Read more]

Hi Pam,

I was diagnosed April 2021, so pretty recent.

I was told the same thing, three to five years. That was quite shocking.

The more I investigated that statement the more I realised that this is an average. The data has been collated over many years, including data from before any drugs were available to us. Certainly OFEV was not available…[Read more]

Hi Wendy,

Reading your post reminds me of the Mel Brooks film Blazing Saddles. “These are simple farm folk, you know……..morons.”

That what I think of when there are people who resort to personal insults when they are losing an argument.

I am of the opinion (rightly or wrongly) that I have not go that long to go, so I dont really care…[Read more]

Hi Marj,

Jeff in Sunny Dorset England here.

You dont say how old your husband is, not that should be important, but I am a few days off 62 and was diagnosed with IPF in April 2021.

I mangaged to avoid Covid for two years, avoiding crowded places, wearing masks (and still do) I have had three jabs.

A month ago my Daughter, who is a Paramedic…[Read more]