JillT

Hi @kwitherspoon64

So sorry to hear of this new dental diagnosis, Kathy. That must be frustrating while also trying to accept/digest a final diagnosis of IPF too. I hope you’re being gentle with yourself during this time, and are able to get the support you deserve. Feel free to write this group anytime – I may be bias, but the people on here are…[Read more]

I think I need to try and get my hands on this book @jill-tanner ! Sounds like a good one. I’ve never bought any drugs overseas, with prescription or not, as the Canadian healthcare plan covers most of Ofev here but I have heard of a few people doing it. I was always uncertain about it, but don’t judge anyone who may need/want to go that route to…[Read more]

I completely agree with you @jill-tanner!
I just flew home from California yesterday and felt it necessary to “justify” my mask and cough to IPF, not coronavirus, simply based on the way others were looking at me. I think I might add a vinyl quote to it (I have a vinyl machine) that says: “it’s not me, its you”. Or I thought about wearing a…[Read more]

@jill-tanner

Hi Jill,

Thanks for connecting with us, although so sorry to hear that no one has returned your inquiries about patient care registries. I can’t remember which part of Australia you are in, but I know a friend who had a transplant at The Alfred in Melbourne for IPF, and he is very active in both that center now (I believe as an…[Read more]

@jill-tanner

Hi Jill,
Happy Sunday – I hope you’re having a nice weekend!  Yes, I’d read this article too or one very similar, how scary about the damage of the bushfires to our respiratory system and air quality. It reminds me of the foundation that has now been set up for EMS responders of 9/11… many of them ended up with PF after inhaling…[Read more]

Hi @jill-tanner,

Thank you for such a thorough reply to @kathleen-greco‘s question regarding Metformin. Your understanding is similar to mine, it hasn’t been tested/proved effective yet for IPF management, although there is some research on this topic. BioNews released this article last month, which sounds…[Read more]

Hi @jill-tanner,

I got your last post that was “flagged for moderation” but not likely due to the length and instead due to the formatting. It looked all like code, which tends to happen when we try to copy and paste something to the forums but we aren’t sure why it does that! Were you trying to copy and paste something your reply? Hmm, I’ll see…[Read more]

Hi Jill ( @jill-tanner ) thanks for bringing mouth pain to the forum. I have experienced tooth pain and mouth pain. Dentist & Dr. found nothing. I was recently in the hospital with pnemonia and found out that foot and hand tingling and itching was due to oxygen problems. I am on 24/7 but the extremities weren’t receiving enough. They prescribed…[Read more]

@jill-tanner

I read somewhere max dose recommendation is 1200 mg but I know nothing about NAC and how it is supposed to help IPF improve.  It is an enzyme and many may have plenty or react to it.  Hopefully you will find something to help you. – Steve

@jill-tanner.

Hi Jill,

What dosage were you taking and were taking NAC with food or other pills?

Steve