Malcolm Mann

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 starting…[Read more]

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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. I…[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 playing…[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 irreverent…[Read more]

Hi Bob & Mark

I was a triathlete and swimming was my best leg, I’m no longer running or riding but the swimming continues, at a more leisurely pace. I wear a tri wet suit which provides buoyancy and a level position in the water, so I dont have to kick, saving a lot of energy. My swim times haven’t deteriorated all that much, I’m still in the…[Read more]

Hi all I’m on 2x 100mg Ofev and am handling it ok, (as opposed to how I tolerated 2 x 150mg a day) I have no idea what food s I can tolerate and vice versa, I seem to have random diarrhoea events, when ever. From an Epicurian foodie to my present self, how the mighty have fallen.

It’s a work in progress but the portion size has definitely been…[Read more]

Hi all

I to had similar problems with 150mg Ofev twice a day, I was not tolerating it at all. My doctors gave me a 2 week holiday then 150mg once a day till I got back up to see them, and now for the last month I’ve been on 100 mg twice a day.

I’m tolerating the 100mg dose very well only very slight discomfort ( & emergencys).

cheers Mal

Hi all

Thanks Jean-Michel for the link to Christina Hunts site, the breathing exercises there are also instructive.

The pulmonary people here in NSW Australia  (in my experience) don’t rely on the 6 minute walk test to evaluate patients commonly, I’ve only done one in 4 years. Our dog & I do my own walk test weekly over a beautiful hilly fire…[Read more]

Hi Pete Charlene

I’ve had a couple of really tough weeks on Ofev, yesterday I rang the lung clinic, they suggested I have 2 week holiday from ofev, to allow my digestive system to return to some semblance of good order. After the break they say to re start on one 150mg tablet a day and see how that dose is tolerated. Then depending on the results…[Read more]

@rudiross,

Hi Rudi

I’m from Tomakin just south of Batemans Bay, you’re almost local, I think there is a ILD support group in Goulburn, other than that I now know only a couple of other sufferers of this condition in Australia.

The medical industry describes my condition as mild, and I have started Ofev this Feb, I have been a constant cougher…[Read more]

Hi Debbi actually we’re up in Canberra looking after some grand kids this weekend and saw some decent looking pineapples at Fyshwick Market, I’ll get a couple before we go home.

I have a rough pineapple top growing at home, but it hasn’t produced anything yet.

Hi Thom your experience mirrors mine, I’m now trying to work out the safest diet. Mine is not debilitating  & hasn’t got any worse, just there most of the time. I thought the Imodium packet that came with my Ofev instructions was a bad omen.

Debbie, if I could get sweet pineapples here they’d be on my list too, we lived in Qld for a while & I…[Read more]

The stated full cost of Ofev in Australia while still ridiculously expensive is vastly different from what I’ve seen, ie. US$ 2400 per month. I pay AU$6/month as a vet, normal price $35 or so.

Charlene perhaps we could have a guide on what to eat (and what to avoid) while on Ofev, I’ve already sworn off sourdough grain and all heavy breads. I now…[Read more]

Hi Debbi @Debbi Rummery

We’re on a package deal & fly to Cairns, then transfer to Port Douglas probably shortly after arrival, I dont know how much time we’ll have in Cairns this time, but literally I know of only one other person with this insidious disease here, we’d love to be able to talk with others with this problem.

We normally spend a…[Read more]