I suppose because I am an engineer and I am on the spectrum, and I am pedantic I must post this.

Please dont use a Z when spelling laser. LASER stands for Light Amplification by Stimulated Emission of Radiation. Hence no Z.

You dont spell SCUBA – Scooba do you for the same reason.

Anyway I asked my professor about the treatment and he commented…

Read more

Hi Samuel,

I, like you are a really strong supporter of clinical trials.

I have found trials here in the UK rather limited and hence I went all the way to Australia to take part in a trial there.

I will clarify what I mean by limited and be prepared for anyone to correct me. There are trials in the UK and I have been invited to join them, some…

Read more

Hi Stella,

I was diagnosed April 2021. I have been on Ofev since March 2022.

I have to say that all the side effects of Ofev scared me silly, but of course the Pharma’s have to put any potential side effects on to safeguard themself from litigation.

I have spoken to many people who have been on it and they do suffer some side effects.

I… Read more

Hi Katie,

I am also in the UK and was diagnosed in 2021.

Would you be interested to join me in the APF, or are you already involved?

Kind regards

Jeff

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… 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… 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 -… Read more

Hi All,

I recently posted a replay on one of the threads about REMAP-ILD.

The goal of REMAP-ILD is to design a clinical trial which can speed up the assessment of therapies for patients with the various forms of Pulmonary Fibrosis. This will be achieved by creating an international platform to carry out clinical trials that rapidly… 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… 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… 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… 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… 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… 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… 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 … 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… 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… 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 -… 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… 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… 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… 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… Read more

Hi all,

Sorry to resurrect this post, but I wondered if anyone on the Forum has any information on the Pamrevlumab trial?

What I do know that the recruitment for the stage three trial has now closed.

So does that mean stage three is going ahead, or does it mean it’s closed becasue they couldn’t get enough people on it?

Just me exploring… Read more

1) Depressing

2) Horrible

3) Tiresome

4) Frustrating

I added (4) because I dont see any cures on the horizon.

Stay positive though everyone!!

Hi all,

I am a month away from being 62 and I live in Poole South coast of England.

I was diagnosed with IPF in April 2021. I have spoken to my consultant and a number of people who have had the transplant. I think here, it is pretty much the same as what has already been said, aside from your weight. If you are obese, I dont think anyone… Read more

Hi Bert,

Thanks for taking th etime to respond, it’s much appreciated.

Looking at the small print on that website I found it was only for sale to clinicians and researchers not to plebs like me.

How are you on the drug? Do you feel any benefit? Or do you think you may have had the placebo?

Sorry for the questions, but if it does what it… Read more

Hi All,

Yesterday I had a meeting with my consultant where she said I could now take OFEV.

Ok, that’s good I thought, but whilst this is putting the brakes on, I want to be even more selfish and want to find something that will stop or even reverse IPF.

Not much to ask for is it?

I have seen trials taking place of ENV-101, now at phase… Read more

Hi Russell,

I am sending you my love and best wishes and will be with you 100% on your journey through this despite me being thousands of miles away in the UK.

Stay positive my friend!

Keep us up to date when you can.

Kind regards

Jeff. (diagnosed April 2021).

Hi Joe,

Yes, that’s exactly what the reserch champion role is.

Raise awareness, publicity and raise funds for research into first finding something to stop progression and more importantly find a cure.

Campaigning by the APF brought about the change of NICE to allow all sufferers to be given Nintenidab, so a win for the… Read more

Hi charlene,

You asked: If given the option, would you consider it or are you actively pursuing a lung transplant for the treatment of IPF/PF? How do you feel about it?  

I am not so far down the road as you. I was diagnosed in April 2021. I must admit I still have not got my head around the diagnosis yet. I did ask my consultant about the… Read more

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… 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… 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,… 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… 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… 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… 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… 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… 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… Read more

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… Read more