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…[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]

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…[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 here…[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 says…[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 APF…[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 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.