[Jeff Taylor-Jackson]

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 have been super lucky and have not had any, the odd stomach cramp but thats about it.

I am not aware that Ofev causes depression, I stand to be corrected about that.

I am so sorry to hear you are suffering depression, it must be awful for you. I had it many years ago, so I do really sympathise.

I am not a clinician, so I cannot offer any advice from a medical perspective, only that I would be talking to your consultant as soon as you can about your symptoms. They would be best placed to help you, that could be a change from Ofev to one of the other anti-fibrotics, or perhaps something to help with your depression.

I hope in some small way that helps.

Kind regards

Jeff in England.

[Jeff Taylor-Jackson]

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

[Jeff Taylor-Jackson]

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 do any harm!”

[Jeff Taylor-Jackson]

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 dismiss everything, someday, there will be a cure.

Keep safe, stay positive.

Jeff

[Jeff Taylor-Jackson]

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 of them replied that they never had or get indigestion. Just me then.

I am on 20mg of Omeprazole daily. I must admit I dont get the acid reflux anymore.

I have not had or going to get the repair, it’s far too big an operation. However a friend of mine from the APF charity here in the UK has had a LINX sugery done. I need to catch up with him and see how he is after.  LINX is fitting a magnetic linked band around the hernia, it is done in a day.

I cant remember the exact cost, but it’s not cheap that for sure.

Kind regards

Jeff

 

[Jeff Taylor-Jackson]

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 was used for COVID, and that is why the various Covid drugs came to market as soon as they did.

We are all hoping that REMAP-ILD will get a drug that A) Stops the progression, and B) reverses the fibrosis.

Wouldn’t that be something?

PS I would be happy with (A) right now.

Jeff in England.

[Jeff Taylor-Jackson]

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 sorting things hands on or off site testing and qualifying the product.

I dont get involved in the testing or qualification anymore as I am now 100% Working from Home. I have been for the past 20 months.

I just cant risk Covid or getting exhausted running around at work. (and coughing all day long)

As for giving up, it has crossed my mind many times. Right now I am not that close to retirement that I can afford to do that, and for the most part sitting at my desk at home, takes my mind off of IPF.

I can drag myself out of bed in the morning and walk across the hallway to work, so I am lucky.

So I guess my long winded answer to the question is this: it must be a personal decision based on your circumstances and how you feel, not anyone elses opinion.

Whatever you decide you have my thoughts and prayers.

Jeff in England.

[Jeff Taylor-Jackson]

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 enough data, but that’s all I had.

For me, I’m pretty certain my headaches in the morning are due to the broken sleep, maybe it’s my brain telling me to wake up because I am not breathing enough – Who knows.

I do suffer from migraines too, so whether they are linked more to my IPF is another unknown.

At least the Tylenol works for you.

Kind regards Jeff in England.

[Jeff Taylor-Jackson]

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 Pneumonia drug to market in a lot quicker and efficient manner. Then along came Covid and the REMAP method was again used to bring the covid vaccine to market in a short period of time.

There is now funding to look at using REMAP for ILD and IPF, so lets hope we can find a drug that works for us in a shorter period of time than has been taken in the past.

This is not a UK thing, this project is an international, collaborative project involving ILD experts from around the world, including scientists, clinicians, patients, patient organisations, and industry.

Stay safe, stay positive everyone!

Jeff in England.

[Jeff Taylor-Jackson]

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 now taking a 15mg pill every day.

The chair did add that really the Zinc need to go to the right place, so I guess he means the lungs, but with the caveat that – it cant do any harm right?

There is an article published here in the UK about this research that I am trying to get hold of. I am not clinical so if it’s too medically technical I could ask if some one could dumb it down a bit so we may have a chance of understnading it.

I will post again if I get the article.

Stay well everyone!

Jeff

[Jeff Taylor-Jackson]

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 particular path. If I ask about the research they are doing, I get very enthusiastic responses.

So I guess what I am sying is if they are interested in Zinc, it will go further, if not you are blown off.

That said, I will definitely be bringing this up. I also went down to the chemists today and bought two bottles of Zinc and I have taken the first pill straight away.

Why not?

Regards

Jeff

[Jeff Taylor-Jackson]

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.

[Jeff Taylor-Jackson]

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 problems. However I am keeping myself out of the way of Covid and I therefore dont annoy anyone in the office with my coughing. I can easily sit at my desk and design stuff on a computer, so its not a manual job where I am walking around a factory floor or a builing site or similar. So I am lucky I can carry on, keep earning a few bucks and hopefully carry on putting into the pension pot.

I have not got to the point of deciding to stop.

Regards

Jeff.

[Jeff Taylor-Jackson]

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 biggest annoyance to me.

I am constantly amazed at how many people smoke outside the hospital entrance, in most cases sitting under a sign that says “No smoking here, please use the area provided.” I also get totally wound up when I see the (I’m going to use a couple of English phrases here) Fag butts or dog ends thrown on the floor and trodden on to extinguish the cigarette, in some cases just thrown on the floor. The attitude must be that it’s not litter. Well, it is and I object to getting fag butts stuck to the soles of my shoes every time I walk into or out of the hospital. If I challenge anyone, I normally meet with abuse along the lines of “I have a right to smoke if I want to” I always reply “I also have a right not to breathe in that crap you are smoking”

Most of the time I try and avoid the confrontation. I only know to well that life is too short.

Vaping is not as bad, but was designed to wean people off of tobacco. It now is seen as big business alternative. I dont suspect that Vapers realise they will end up with popcorn lung as it is water vapour they are breathing in. Dont forget if you are breathing in or smelling smoke, then chances are its been in someone elses lungs. Covid has not gone away so be careful everyone.

Jeff in England.

[Jeff Taylor-Jackson]

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 call was not taken.

The one time my call was eventually answered the receptionist said that the waiting list was six weeks, but I could try their new “E consult” method where the GP phones you. That only works if you are in or can get to the phone, because if you miss that call, you have to start over.

When I missed the call and tried to call back, this took two weeks to get the surgery to answer the phone, I had the same response.

I did say that I couldnt do the E consult because I needed  GP to listen to my chest and my breathing. At that time I was concerned that I couldnt catch my breath for some reason.

The receptionist said “Well you will have to wait”

I said “Then If collapse and end up in hospital, you will know the reason why”

The receptionist laughed and put the phone down.

Eventually I tried the new service we have here called 111, its like our 999 or your 911, but for non-life threatening events.

I was advised to present myself to A&E. I then had a blood test, ECG and an X-Ray. It was only then the doctors in A&E told me something was not quite right.

So it did take about six months for my diagnosis. This was from me worrying about my constant coughing and breathlessness some months before my first call to the GP, for me to get the news.

I appreciate that nothing is perfect, but my GP service does leave a lot to be desired.

Regards

Jeff.

[Jeff Taylor-Jackson]

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 lucky.

As the antifibrotics have been shown to slow the progression, then the answer you are looking for is: “start them as soon as you can” with the caveat that you do this under medical supervision. the drugs are very expensive so make sure you medical insurance can cover the cost.

The UK price is £25K per annum.

Hope it helps

Jeff in England.

 

[Jeff Taylor-Jackson]

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 to anyone in the UK unless you were really bad with your FVC something like 40% (I stand to be corrected here).

Since 14th February this year, with recommendation from the Consultant, it is available to anyone who has lost 5% lung function on the initial test or the last test.

This has happened to me and I am now taking OFEV (Nintedanib). I was worried about the side effects, but so far afetr a week I have had none at all so I am indeed lucky.

This 3-5 year statement all depends on your personal circumstances. Age, environment, if you were/are a smoker, exposed to dust, chemicals or other nasties like asbestos all your life.

I expect your consultant has discussed this with you.

As you see from the replies on here, this average has gone way out.

I am also chasing pharmaceuticals all over the world to find out where they are with drugs that can stop and reverse our condition. They may not exist right now, but they are coming!

Above all stay positive, be happy, there are drugs that can help and with this great Forum there is great advice and support.

Regards

Jeff

 

[Jeff Taylor-Jackson]

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 what I say, (as long as its not a personal insult) to anyone. If they dont like the way I look, dress or the football team I support, it’s their problem not mine.

We all have bigger problems to deal with than care what other people think about our appearance!

In answer to the question though, I too have put some timber on since diagnosis. Not too much, but certainly noticeable in recent photo’s. But its who I am now and what I am dealing with at this moment in time that those photos represent, whether I like it or not!

Best wishes

Jeff

[Jeff Taylor-Jackson]

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 popped in to say hello. As Paramedics here are tested pretty much every other day, and my Daughter has had covid already (three times now) I didnt think twice about giving her a hug. It’s what fathers and daughters do right?

Unbeknown to us all she had Covid again and gave it to me, and I then gave it to my wife, who has Asthma, COPD and one lung since birth.

We didnt go to hospital, but I certinly felt lousy for three weeks. I certainly do not want to get it again.

I do feel as if my breathing has got slightly worse and I do seem to be coughing up more than before.

So as for you question of recovery, my answer would be ” I bloody well hope so” I am so annoyed with myself for getting it after two years of being really careful.

I guess the vaccinations helped keep me out of hospital and anything worse. That said it does not stop you getting it again, so as an IPF sufferer, I would say keep vigilant and stay as safe as you can possibly be. Covid has not gone away.

I do hope your husband is feeling better.

Kind regards

Jeff.

 

[Jeff Taylor-Jackson]

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 any avenue that leads to a cure!

Kind regards

Jeff.

[Jeff Taylor-Jackson]

1) Depressing

2) Horrible

3) Tiresome

4) Frustrating

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

Stay positive though everyone!!

[Jeff Taylor-Jackson]

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 here would take you on. One chap I spoke to recently was 67 when he had his and is now 72. He is happily back riding his pedal bike with his mates, he says he struggles to keep up, but I’m sure thaey are not racing.

As for the single or double, my wife has COPD. She was born with CDH (you might have to google that) and as such only has one fully developed lung. She recently had a lung function test, and the guy told her that despite her single lung, she functioned as well as someone with two.

Kind regards

Jeff

 

[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

[Jeff Taylor-Jackson]

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 messages to make them secure by frequency shifting. She was told by the old geezers that it would never work and she should stick to the films. Now, all communications in the world are done by frequency shifting – all thanks to Hedy Lamarr.

I am not dissing your pulminologist, certainly they know more than me about medicine, I’m just a Chartered Engineer, but dont be put off by their response. I’m sure the folks at Cedars Sinai are on to something. If there is no research, then there’s no cure right? If it doesnt work (worst case) then that line of research can be shelved and we look for another cure.

In the meantime I hope that the research into Zinc has some great results, what I read (like others here) in their report is very encouraging.

Sometimes that cure is right under our noses and might even be found by accident. Penicillin for example.

Stay safe, stay positive!

Jeff in England.