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  • Bill Mattila and Profile picture of Libby FisherLibby Fisher are now friends 1 month ago

  • Bernard I’m sorry that they do that. I guess money is more important, we get Charged 11 thousand US dollars a month. My insurance is good so I only pay a low copay. I too suffer from side effects that most people do even the gas and bloating. I have had exrabations a few times it isn’t nice. I’ve had the IPF for at least 15yrs or so and I still…[Read more]

  • I have fits with my mucus. I do Mucinex  everyday at least the maximum (2400mg a day) so it’s a bear to regulate. I also have a vibrating vest that works. But you have to do it at least 1hr a day or more. I have had IPF for a long time, but didn’t do anything about it. I didn’t know I had it. So I went to lung man and got the news but now I’m on…[Read more]

  • I had to kinda of remind my Doctor that I was short of O2 on working. He wrote a 2liter constant flow so now I haul a 22lb machine around with me. They said that the small machines won’t work on constant flow and where only on demand which was a lie.

    They will do that and up to 5liter. Now I’m stuck with boat anchor.
    Now should I spend 2000$ on…[Read more]

  • Dear suffering OFEV users. I have been on OFEV for 2.5 years. First year no side effects.

    Now I have them all right down to the rash. Elevated alt and my thyroid test is messed up a little. I take 15omg twice a day I have diarrhea and sickness too. I skip a dose to reset my tract. Will be calling Doctor about my rash and other meds cause sun…[Read more]

  • Also Charlene THANK YOU for hosting this forum. You are a god sent angel.

  • Got use to cpap machine yeah ! Also read I too take simvestation . Have taken statins for many years now. Who knows
    What helps anymore? Take my meds and feel good for what is wrong and not worry about everything…..

  • My Ofev has slowed my IPF way down. But now Cpap machine is helping me breathe So I do it every night. I hate it but so welcome to disease. At least it has a good side effect.

  • Bill Mattila posted an update 2 years ago

    Running more out of breath. Going to doc. Next month.

    • Hi @bill-mattila, so sorry to hear this! Are you keeping track of your 02 sats when you’re feeling this way? It might help a bit to bring to the doctor’s next month, if you have a bit of a log. Just a piece of advice that was really helpful when shared with me. Keep us posted, and hang in there.

  • reply about the taking of OFEV Seems that it gets your gastric moving from a hr after until next dose. I try to take it on a full meal. Not always the
    situation you will be in. Good luck everyone.

  • My taking Ofev is getting interesting. I now have more side effects. Take Ofev with your meal. That’s my plan lots of food take at same time everyday. Gives me sore butt too. Sorry about that.the terminology.

    • Hello Bill, during my experience with OFEV I found it beneficial if I ate a banana before taking my medicine. I also ate a protein when taking my meds. I had to lose weight so I ate 5-6 times a day. I considered these meals my mini-meals. I had a gastric episode probably once a month. I did take my meds at the same time every day as you have…[Read more]

  • @charlene-marshall You found a new job in LIFE. LOL your hands are full. Did I tell you I have had this IPF for at least 15 yrs or more.

    • I have found a new role since my diagnosis @bill-mattila, I agree. I never thought that my diagnosis of IPF nearly three years ago would open this door of opportunity for me, but I am so thankful it has as I’ve met so many wonderful people. I wish it wasn’t IPF that brings us all together, but I am so thankful for the members on this site, who…[Read more]

  • @charlene-marshall Not much to maintain. change filter in compressor. And keep vest clean. You have to adjust the straps on occastion. Doctor recommends vibrating twice a day . One hour total. It comes with pre programmed. Push button and shake it.

    • Wow, really interesting Bill, thank you so much for sharing. I am curious if anyone else on the forums uses this method to help reduce the cough? Glad it is helping you and it isn’t too difficult to maintain. That is excellent! Your pulmonologist recommended it, or was it your GP, Bill? Thanks for answering my million questions 🙂

      Enjoy your…[Read more]

  • @charlene-marshall Glad you are back. I love the forums. I have trouble getting oked for my OFEV. every three months same jump through the HOOPS.

  • @raymond-c-king yes Ray you probably can’t use the vest. Cause it does vibrate stomach too. It was prescribed by the doctor. Try the mucinex. Don’t take too much. I used to live on it before I was diagnosed with the IPF. I take the cheap stuff. Just Kirkland from Amazon 400mg quick release. One Ihave had the IPF for almost twenty yrs. two tak…[Read more]

    • Hi, I cough up a lot of phlegm every day, and go through lots of Kleenex! Mucinex 12 hr release is what my doctor recommended and it seems to help a little. I have chronic sinusitis and bronchitis, so I’m also on Flonase, Singulair and saline rinses. My two cats like to sleep with me, so sometimes I take Benadryl before going to bed. I just…[Read more]

    • Hi @bill-mattila,

      Thank you for your reply. I appreciated your Vest and Mucinex comments.

      WOW! You say you have had IPF for almost twenty years! I guess from what they say about IPF on the internet, you have really exceeded the life expectancy of three to five years by quite a bit. They do say that everyone if is different though! I was…[Read more]

  • I handle my excess with a vibrating vest. And mucinex works for me. I mentioned to the lung man and he agreed but don’t take too long.

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