[Jeff Taylor-Jackson]

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 says on the tin it could be a game changer.

Look after yourself,

Kind regards

Jeff in England.

[Jeff Taylor-Jackson]

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).

[Jeff Taylor-Jackson]

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 APF there.

Loads of information on the APF website.

https://www.actionpf.org/

Links on there to become involved in your local area, links to research and fundraising.

Hope there is something there for you.

Kind regards

Jeff

[Jeff Taylor-Jackson]

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 “last resort” Lung transplant option.

He was matter of fact about it, saying pretty much as you said in your post.

For me, right here and now, there is no cure for IPF, so its going to get me sooner or later, so I have zero chance of survival.

Given that lung transplants might give you a 10% chance of either survival or another five, maybe ten years to be with your family a bit longer……well, I’d take that 10% over zero%.

How do I feel about it? Not great if I’m honest, given the hand I have been dealt, so I am trying to make the best of it and try and do it in a positive way.

I am actively trying to help the medical team at my hospital in some small way with their research. Will they find a cure? I dont know, but if you don’t shoot, you don’t score do you.

I really hope for all of us – someone, somewhere has a breakthrough.

Kind regards

Jeff.

[Jeff Taylor-Jackson]

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.

[Jeff Taylor-Jackson]

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 function FVC got to such a level I could have the “doesnt stop it slows it down a bit” Nintenidab or Perfenidone. So imagine my delight that in November NICE decided that OFEV could be given at any stage of our suffering.

I wondered about why I would take a pill, and not this drug inhaled. That does not and still does not make sense to my Engineers small brain. I have looked at the side effects of OFEV, I must admit that I am not looking forward to any of the symptoms.

I would like to know how you get on with the switch and of course I wish you all the best going forward. Please post with your updates.

I think someone mentioned it earlier  – we need a cure!!

Have a healthy new year everyone.

Kind regards

Jeff.

[Jeff Taylor-Jackson]

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 attack, stroke, bleeding problems, and a tear in your stomach or intestinal wall (perforation).

The most common side effects of OFEV are diarrhea, nausea, stomach pain, vomiting, liver problems, decreased appetite, headache, weight loss, and high blood pressure.

I am not looking forward to that.

Kind regards

Jeff

[Jeff Taylor-Jackson]

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 the Covid situation has raised the awareness of lung scarring and indeed ILD and IPF. I am in England and belong to a charity, Action of Pulmomary Fibrosis (APF), we are actively raising money for research and raising awareness of this disease we have. I am aware of a couple of studies that are promising, again like all of you have mentioned, these are all 5 years away,  at least from even becoming licenced.  One study being carried out at Kings College London is a direct result of Covid. I know one chap who is a patient on that very study. It is a very small sample and will need more participants for the dataset to be anaylsed properly. I tried to join, but was told the study was closed for the time being.

I suppose it is difficult to understand, but these things take a monumental amount of time to complete, they always take longer than you think and cost more than you thought it would in the first place. I am an engineer and pretty much every project I have ever worked on – satellites, aircraft or submarines, it’s always the same. Late and overbudget.

I am 61, I fear that nothing will be ready in time for me, but we must not give up hope!

Regards

Jeff

[Jeff Taylor-Jackson]

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 good lungs and are hell bent on destroying them. I have never smoked, so I do feel a certain amount of anger at seeing people smoke. At my workplace they have provided shelters at the rear of the car parking lot. Of course this is way too far for people to walk to, so they sit on the wall outside our building. Another thing that yanks my chain is this business of throwing the butts on the floor and treading on them. This, to the smokers is not litter is it? What we end up with is hundreds of butts outside our building that get trodden on and walked into the building. Someone has to clean this up right?

I think this is also a cultural and attitude issue that we will not overcome. In Japan, Where I was fortunate enough to visit recently, there is a completely different attitude. No Japanese will smoke in the street. They certainly would not throw butts in the street causing litter, because litter is not a problem in Japan, they just dont litter, vandalise or graffitti. If you do see anyone smoking in the street, the chances are they are not Japanese. The Japanese have dedicated smoking “rooms” in the street where the smokers go. They have a thing in Japan called “Respect”. Something we dont have in the UK.

Jeff South coast of England.

[Jeff Taylor-Jackson]

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 coughing in the mornings seem to be a bit better, i.e. less.

As you say Steve, the acid reflux may have something to do with it.

Jeff, Southern England.

[Jeff Taylor-Jackson]

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.

[Jeff Taylor-Jackson]

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. I also have bouts of sneezing for no reason. I have never suffered from hay fever, so I’m sure it’s not that.

So there could be someting in the acid reflux and nasal congestion.

I have a meeting with my consultant in a few weeks, I will ask her about it and feedback what her views are.

Kind regards

Jeff in England.

[Jeff Taylor-Jackson]

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

[Jeff Taylor-Jackson]

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 more awareness and a bit more research.

Whilst both are dreadful diseases to deal with, IPF takes just as many of us as Cancer, but it seems not as much is being done. It is getting better, that’s for sure.

I speak as someone from the UK, other parts of the world may differ.

Now I suppose my rambling point to all of this is: Now Covid is rampaging around the world, there does appear to be a link with lung scarring so this may well raise the profile of IPF and PF. I know there is a very small study in Kings in London, that will try to use the patients own white blood cells in to possibly treat lung scarring due to Covid. Lets hope that it shows positive results and this treament can be used for all sufferers of IPF, PF or Covid.

Truly sorry for anyone who has been stricken with Covid and now with PF.

Stay positive everyone!

 

[Jeff Taylor-Jackson]

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)

 

[Jeff Taylor-Jackson]

@bernardmckenna

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 phone, or did not call when they said they would. Of course there were not appointments at the surgery. All I got was “you can do an Econsult” from the receptionist. This is impossible if you need a GP to listen to your chest. The NHS is great (My daughter works as a paramedic) but it’s a bit broken in some places. My consultant has referred me to the local University hospital as they have a centre of excellence for this stuff. I will keep my consultant at the local hospital as he will be collating the results of my tests. I had a Lung function in May, tomorrow, I have to wear a monitor for 48 hours to check oxygen etc. In August I have another Lung Function test, so I hope to see the consultant soon after that.
I am sorry to say, I have had issues with the NHS in the past with my wife when she was seriously ill. You virtually have to make yourself a PITA to get anywhere. I am quite shocked at the statement you made that your consultant is “busy”. I’m sorry but he/she should be top of their list to everyone they are a consultant for. That includes you. You should be made to feel that they 100% care about you and should give you all the answers you want and need, it’s your life after all. I would be a bit more stroppy with them if you dont feel you are being treated that well. Ultimately you could ask for another consultant or be transferred to another hospital to be put into the hands of someone who actually cares about you.
I must say my consultant is 100% a top bloke, even though I have only had one consultation with him so far. I guess I have been lucky.
We are in the same boat mate and we have to make the best of a badly dealt hand.
Best regards
Jeff

[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 pension pot all these years!

I am a research champion for the APF here in the Wessex region, so I am always looking at new research and any clinical trials that we can get involved in. Like I said we need a cure pronto!

The sooner we can raise awareness, get funding and get more research, the quicker we can be on the road to a cure. In a bizarre way, Covid and lung scarring might have helped that a little bit.

Stay safe, stay well.

Kind regards

Jeff.

[Jeff Taylor-Jackson]

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 of the IPF researchers are excited about it.

It is in it’s infancy and a very small study. what needs to happen is a larger group of participants. With the amount of people affected by Covid, then there may be enough to create a decent study.

To me, lung scarring is lung scarring caused by Covid or by the Idiopathic (That we are all confused about where we got it from). so if it works great!

This will be a few years before any results are known.

Fingers crossed it shows positive results for us all – wherever we may live in the world!

Kind regards

Jeff