Hi Prof

I reduced my dose rate, 2/3s two tabs x 3 times a day. In my case my appetite improved, and I’ve stopped losing weight.

I feel a lot better, happier and more alive

Cheers Mal

Hi Charlene

Another side effect for me was weight loss, I’m on Esbriet which in my case led to a major loss of appetite, while on the full dose of 3x 267mg tabs 3x a day.

I’ve dropped down to 2x 267 mg x3 a day, and I can enjoy food again.

I’ve put on a couple of kilos now, and I am enjoying eating again.

I’ll have the big breakfast thanks 😊

Hi I’ve been diagnosed with IPF since 2015, I’m on pirfenidone, I’m on O for exertion only with an ingen poc, and I am pretty lucky with my slow steady rate of decline.

However I have a really gross cough, (disgusting), but have found something that really helps me, codeine linctus, I take 2.5ml with a syringe orally, and hold it in my mouth for…

Read more

Hi Male, 74, lives in Tasmania Australia, I’ve had IPF since 2015, & have been on Pirfenidone since 2019 & started using a POC for exertion last year.

Does anyone have to cough really loudly while trying to clear their throat.

Were looking at selling our semi rural house because of the garden maintenance etc and moving into low maintenance…

Read more

Hi had diarrhoea while on Ofev, which I discontinued, and now constipation with Esbriet, with a lot of burping. I’m now taking a laxative which helps.

Cheers Mal

Hi I have an inogen one G5 concentrator, it comes with a 12 volt charger for use in the car or van.

Were heading north for the tropics for 3 months this Australian winter.

Cheers Mal

We live in Tasmania the southern most Australian state, winters here are long & gloomy, but not really cold by northern hemisphere standards.

We usually pack up our caravan ( “trailer”, US spelling) and head up to the tropics for 3 months.

Cheers Mal

HI the computer says no to my post again HEEEEEELP

G’day Scott

Yes that’s my point too, I only want a minimal backpack just to carry the concentrator, I’m in Australia and the only one I can find locally is the Inogen one.

There are some on Ebay from the US but most of those have storage.

Luckily I only need the POC for exertion ie walking, working in the garden and mowing, so a back pack… Read more

Hi I’ve just received an Inogen one G5 POC, and am interested in finding a small compact back pack to carry the POC, Most of the ones I’ve seen have storage for other stuff making them bulky.

cheers Mal

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… 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… 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… 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… 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… 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… 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… 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,… 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,… 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… 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… 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… 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… 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… Read more

Hi I was on Ofev for 15 months, I had major problems with side effects, at my Dr’s suggestion I reduced the dose from 150 mg twice daily to 100mg x 2, but I still was not coping well. I was placed on several 2-3 week pauses in taking the drug, I suffered from irregular diarrhea, with the occasional, (as they used to say in the army,)… Read more

Hi Charlene

We’re so sorry and shocked to here your news, and so glad you appear to be over the worst of of it. Please take care and do everything to regain your strength, us IPFers look forward to your positive help and advice. Virtual hugs from the Austrzlian contingent.

Cheers

Mal

 

Hi I don’t know if I should start a new thread “stopping Ofev” , I stopped on Easter Saturday after another unauthorised discharge while in bed Fri night. I found, even on only 100mg x2 daily the benefits were out weighed by the side effects, lack of bowel control and a general feeling of continual dullness. My wife says while I’m on Ofev I’m… Read more

Hi Loraine
In these days of restricted movement Jan & I are doing the old 5BX exercise program from the 50’s, designed by the Canadian Airforce. No equipment other than a rug is needed, You get a core, aerobic and strength workout, we add a few extras as well.
The expression on Ki’s (lurcher (dog)) face while he’s relaxing on his bed make it… Read more

Hi everyone
While the world has disintegrated we have been house sitting and exploring Australias island state Tasmania in a little red sports car. Tasmania is stunningly beautiful.
We’re 850 kms and an overnight sea crossing from home, there is little Covid 19 here but its ramping up on the mainland (Australia) and we have to drive through… Read more

Hi Joe & Mark

While this scientific paper doesn’t deal with medical treatment of IPF it does give a clear overview of available  antifibrotic drugs available now and their side effects.

https://journals.sagepub.com/doi/full/10.1177/1060028019862497

 

cheers Mal

 

Hi

I’m on the other side of Australia to Jill but received the same advice, the first question “have you had a flu vaccination” (answer “I’ve had it every year for the last 20 or so years and never had the flu, or a problem with the vaccination”).

The next suggestion was to ensure I had a pneumonia shot, that was the first I had heard of… Read more

@charlene-marshall

Hi

Where we are the fires have not relented, only grown bigger, two mega fires have now merged, more houses were lost over the weekend. The problem is that the fires are seated in inaccessible mountain country, which up-til now was dense eucalyptus forest, interspersed with areas of farm land. The fires this season are… Read more

Hi all

There is a very good MOOC (online uni course) called “Respiration in the Human Body” on EDx, from a Belgian university that gives a good grounding in lung function and all things in respiration. The course is basically in french but with english subtitles and is readily understood.

Its not currently operating, I think they run it… Read more

Hi Nan and Susan
We survived NY eves fires, the front came within 100m of our home, we and the town were saved by a massive wind shift at exactly the right moment, that blew the fire back on itself. Other villages didnt do so well with the southerly blowing the flank of the fire across the towns.All in all a horendous day, 40degrees c (105)f,… Read more

I tried to post on this subject before but the computer said no.
When I was diagnosed with PF in 2015 one of the very first question was “do you have birds?” I answered “no”, I was never asked if I used feather/down bedding.
We have been using down doonas/divets/bedding for 40 years. We have since changed over to a wool duvet, and banished… Read more

Hi Charlene & Susan
Thanks for the kind words, we actually had a little rain, (6mm) which I hope is a start. Susan we’ll take all the rain we can get, the air here is beautiful today, cool and damp, perfect breathing air.

I’m still having difficulty posting responses, just the odd one gets through, usually the short ones. I shall persist.
Cheers
Mal

Hi everyone
We have a different problem, eastern Australia is in severe drought, with high temperatures. We are experiencing the worst period of bush fires in my life. There is a massive fire just north of here and we have had continual smoke for the last two weeks, as has most of the east coast.
In Sydney yesterday visability was down… Read more

Hi all
I,ve led a low fat high fibre life for years, but now am in a quandry, the OFEV literature recommends bland low fibre diet. While my gastroenterologist (and the rest of the medical profession) insists on high fibre diet. We enjoy an international diet, a bit Mediterranean, a bit Asian & Australian general, 95% home cooked.
Since… Read more

that should be can’t post more than 3 lines

mal

test

can’t post again

Mal

Hi all

No problems with heat here at the moment, we’ve been in New Zealand for the last 3 weeks, cool temperatures and light showers pretty well every day. In between the showers it has been perfect IPF weather.

Hot weather really effects my exercising ability, back home (Australia) I walk early on the  morning before the heat sets in.… Read more

Hi I play ukulele, & have for ages, the uke is a lot easier to learn the guitar being only 4 strings, (less left hand dexterity required) they’re much more convenient too. They come in a bewildering assortment of shapes, classes, prices and sounds, and you can sing while playing, this may or may not be an advantage.

One of the dangers in… Read more

Hi Susan I used to use to sing when struggling in a hard run, like at the end of a triathlon, any song with a March beat will do, it keeps your in rythm and was a distraction, and helped me keep the pace up.

Another exercise resource we have is running, (now walking slowly in my case) with the Hash House Harriers, a world wide slightly… Read more