• 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]

  • Malcolm Mann replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 5 months ago

    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]

  • @Charlene-Marshall
    Hi Charlene the ocean swim last Sunday went very well 32:05 minutes for 1.4 km, it was a beautiful day, warm calm and the water was very clear. A good part of the swim is over shallow reef, so you get the see the local marine life. I’ve done this swim 8 times now and this was my slowest, but I finished among the usual suspects.…[Read more]

    • Hi @mal-com,

      That sounds amazing, way to go! Really glad to hear it went well and that all the ‘elements’ cooperated with you to make your swim successful. I can only imagine the beautiful water and marine life you are privy to awhile swimming, I bet its incredible. I’ve never seen a real reef before, but it is on my bucket list to do so……[Read more]

  • Hi Debbi
    I’m on the NSW south coast and was also diagnosed in Oct 2015 with mild PF, as all the LFTs were normal then they didn’t do anything other than watch & wait, I went onto Ofev recently after some deterioration.
    Jan & I will be in Cairns in May on our way to Port Douglas for the hash house harriers (weird running group,no running for me)…[Read more]

  • Charlene Karl
    Thanks for the responses, the lung clinic here recommends as much exercise as you can comfortably achieve.I’m very lucky they found my fibrosis early too, in some ways I’m here under false pretences, I can do anything I need to, at my pace.
    I can no longer run (because of arthritis), but I do a gym workout 3 times a week, walk(slow)…[Read more]

  • Hi Charlene and Steve
    Thanks for your responses.
    Steve In the 90’s I had laser treatment for planter fasicitis in both feet, which is notorously untreatable successfully, the laser cured it and I was able to run for another 25 years.
    We live in a little village, Tomakin 300km south of Sydney, and 160km from Canberra. We are surrounded by beautiful…[Read more]

  • HI Charlene and others

    I’m a 69yo Australian man, diagnosed with very mild pulmonary fibrosis in 2015. I have had more breathlessness since mid 2018, my condition was confirmed as IPF in Feb 2019 after a squillion tests and biopsy, started Ofev 8th Feb, a month ago.

    The decision of which anti fibrotic was entirely left up to me, I chose Ofev…[Read more]

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