Malcolm Mann

HI I’ve been on Esbriet for 2 years + now, and my weight was falling a couple of kg per year. I’ve started having desert most nights, something I’ve never done before, and my weight has stabilised.

I also gave myself an unofficial break from Esbriet over Christmas, 3 week taper down, two weeks off completely and 3 week build up to the full dose…[Read more]

<p style=”text-align: left;”>I haven’t experienced any taste change and have been taking Esbriet for over 2 years, however my weight is still declining. I’m now 88.5kg down from around 105k dropping 2-3kg per year.</p>
My desired food portion size has halved, and many things I once devoured have lost their appeal.

F’rinstance bacon, once a…[Read more]

<p style=”text-align: left;”>Hi Garry</p>
I’m an 70+ Aussie Veteran, I’ve been on Esbriet for over 2 years with no great discomfort.

The side effects I’ve noticed are awful cough, fatigue,  reduced appetite, changed appetite ie. things I once loved I can no longer eat, insomnia, the sun exposure problem hasn’t really effected me to much, I cop a…[Read more]

My appetite diminished on both antifibrotics, and worryingly the things I should be eating appeal less to me now,  ie vegetables & salads.

My weight loss now has plateaued.

Things I once relished are now unattractive, frinstance, I used to have a big breakfast most days, eggs bacon & trimmings, just the smell of this now revolts me.

My food…[Read more]

Hi Gloria

I’m a swimmer and I’m not on O2, I can swim with a pull bouy (float put between the knees) or a swimming wet suit to provide bouyancy. I only do freestyle & don’t kick at all, if I kick I become breathless after 25m.

Without kicking I can keep going, presently doing 1.2km 3 times a week in 150-250m sets.

It’s great lung…[Read more]

Hi Christie, I just deleted all my old messages is that the cache?.

I’m using 2 diff Android  devices at the moment while away from home at home I use a windows desktop. I seem to have trouble on all of them, particularly with longer answers. 1 or 2 lines goes straight through.

It’s very frustrating I sit here pecking out a magnificent only…[Read more]

Hi Chati

I did answer before but it wouldn’t post

Every IPF sufferer here has a totally different story, it’s the same insidious disease but it’s implications vary greatly.

In my case, I’m one of the lucky ones with mild symptoms that have only declined slowly in 6 years.

I find Esbriet very tolerable and I don’t require oxygen. My obvious…[Read more]

@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]