Malcolm Mann

Hi I’ve been on Esbriet for 10 months, no GI issues but I continue to loose weight. My appetite is greatly reduced, and sometimes I’m just not hungry.
On the positive side my PFT results have remained stable for the last year, and I’m now in the normal cohort for BMI
Cheers
Mal

Hi @Charlene-Marshall
Thanks and all the best for the new year, the packing up is progressing and the place is in total chaos. We’ll be on the ship to our new home on the 26th of Jan.
Do include Tasmania on your next island escape, there’s plenty of room in our new place, we could organise a coughing duet to welcome the new day each morning.
Cheers
Mal

HI all

This is not so much a resolution, but more a real change of life. Where we live in SE Australia in a beach village, we are on a very steep block of land, there are 40 steps between the bedroom and the back yard, and the garden is becoming unmanageable for us.

Last month we decided to sell hoping to buy in the local area, but it seems…[Read more]

Hi All progress report, I changed over from Ofev to Esbriet in May this year because of side effects with Ofev.

Recently I have had two wins.

Since switching to Esbriet I have had no stomach issues at all, and and no other debilitation side effects. A month or so back I was starting to get a rash around my nose and forehead, and I was fearing…[Read more]

Hi David

Like I said we don’t know, without the fundo I may have been much worse position. I glad I had it if only to avoid another potential cause. I read somewhere that while reflux is not a direct cause of IPF (ie there are plenty of burpers without IPF), it is present in many IPF sufferers. Before my fundo I was on a cheerful fundo forum,…[Read more]

I David I’ll put this in points as long winded response failed, again
Coughing since before 2000
PF diagnosed 2015
Reflux suspected despite me being on anti reflux meds (ppi’s) since mid 90’s.
Fundoplication in 2016, good recovery, back swimming inside a month post op.
Fundo surgeon warned against heavy exercise & dont lift heavy weights etc, or…[Read more]

And thank you Canada for providing Charlene to keep this show on the road

@renehakkenberg @charlene-marshall

Answer is coming, the computer ate my homework 🙂

HI Michael
Yes we may have the same disease but there is a wide range of effects, in my case the movement of air in and out isn’t too bad but the diffusion (the exchange of oxygen from the lungs to the blood supply) is quite restricted.Lung function tests next week, first in 10 months.
I took the dogs out yesterday for a walk along the beach, I…[Read more]

Hi Jess

Thanks for your reply, like you my cough is a major concern, exactly as you described, and it can result in headache.

I bought a small open sports car, (1990 Mazda Miata, MX5) as motorcycle replacement therapy, 3 months before I started Esbriet. Not a good move to avoid sun exposure.

I’m now buying long sleeved t-shirts for summer, plus…[Read more]

Thanks Charlene @charlene marshall

Enjoy the ocean, swimming is good for the soul.

I have always swam and done age group competition, over the last 5 years I’ve worked out how to keep swimming with reduced lung efficiency. The main thing is I don’t kick, the legs just come along for the journey. Not kicking means you need a wet suit to maintain…[Read more]

Make that 3 times, I wrote a half a page, hit submit and got an error message “are you sure you wanted to do that?”

Hi Rene I,ve responded twice both times the system has eaten my reply

Cheers

Mal

Thanks Mark & Rene

I’m not one to give up easily, I shall persevere

Na Zdrowie

Mal

Hi all, here is a 4 months down the track report on my switch to Esbriet. I’m still tolerating it well, with no great GI issues, I have had no food intolerance problems and my weight has remained unchanged.

I have developed a dislike for beer, wine or cider are still tolerated. I find the Esbriet increases the sedative effect of alcohol, so much…[Read more]

I’ve been on Esbriet for 4 months, I’m developing an aversion to beer, this is un-Australian.

Cheers

Mal

Greeting from SE Australia where so far this year we’ve had fires, covid and now floods.

While I dont have access to any structured pulmonary re-hab groups, out in the bush abit here, our govt provides an exercise physiologist for us returned servicemen. I go to the gym twice a week for strength, aerobic and balance exercise. We finish off each…[Read more]

Hi everyone and Lou and thanks for the warning, I’ll keep on guard. Our next few months are our coolest and I’ll keep covered. As the warmer months return I’ll switch over to long armed tshirts, I have a wide brimmed cattlemans hat for beach walks etc.

I was in Vietnam 20 years ago and suffered from sun over reaction because of the anti malaria…[Read more]

Hi Michael &Charlene

Thanks for the encouraging thoughts, I’m very happy with the change, but not counting chickens just yet.

I had been dreading the sun exposure effects, but so far there have been none. I am using more sun block, and my skin is fairly impervious to sun damage, ie the damage has been done decades ago.

My normal dress is shorts…[Read more]