The Pulmonary Fibrosis Foundation Patients Support Community connects pulmonary fibrosis patients for support and inspiration... More about this group

Information on Esbriet

  • By LZimmerman114 · New reply 8:29 pm
  • Discussion in Medications for PF · 10 replies
  • Hello, I am new at all of this. Was just diagnosed with IPF. I am trying to find out how I go about getting the prescription "Esbriet" mailed to me in Florida from one of the 29 countries who have approved ...


  • By raggedyanne56 · New reply 8:08 pm
  • Discussion in Medications for PF · 1 reply
  • Does cellcept help with inflammation? Is there anything that can be taken that will help with inflammation besides predisone ...

Ease the cough

  • By regene21 · New reply 6:56 pm
  • Discussion in Medications for PF · 14 replies
  • As my pulmonary fibrosis gets worse of course so does my coughing. I've tried cough drops. Robitusin DM and my doctors have prescribed teslon pearls. None of this has helped. I noticed when I can't breathe ...


  • By KATHARINEBRAY1948 · New reply 6:15 pm
  • Discussion in Living better with pulmonary fibrosis · 12 replies
  • I WANTED TO SHARE THIS ARTICLE Making your own green cleaning products is good for the environment as well as the health of your family. But that’s not all it is good for – if you are looking to give ...


  • By JudyeReiland · New reply 6:08 pm
  • Discussion in Medications for PF · 8 replies
  • I am currently on Predisone (being tapered down) and have gained 20 pounds. What is concerning me is my memory loss. Is that a side effect of the drug? While my pulmonary doc is trying to taper off, my ...

Coughing and Cataract Surgery

  • By Ludja · New reply 4:21 pm
  • Discussion in Ask a Doc · 12 replies
  • Hello! I am a new poster to the boards. I am a family member who is helping an IPF patient (my father-in-law) with managing his disease. He was recently recommended to have cataract surgery because the ...

Getting more confused every day

  • By GoJo4x4 · Posted 3:21 pm
  • Discussion in PFF news and notes · 0 replies
  • Hello everyone. This is GoJo. I have read a lot of posts on here, but have not posted for quite awhile. I have some new problems that are stumping me and my doctors. First I have some very good news ...


  • By ShelaKay42 · New reply 3:08 pm
  • Journal · 12 replies
  • Hello Friends, I'm still here slots been going on this past year I've been getting closer to my Lord and Savior Jesus Christ every day I rededicated my life to him and I am a born again Christian. I walk ...

How long between diagnosis and needing oxigen

  • By DianaKP · New reply 1:57 pm
  • Discussion in Supplemental oxygen · 25 replies
  • According to CT scans, I have IPF. There is 10% scarring in the bottom of both lungs. We just moved to this lovely mile high town 18 months ago and I fear that the high altitude may be a factor in the ...

The lung institute

  • By Tmisskitty00 · New reply 11:54 am
  • Discussion in Living better with pulmonary fibrosis · 29 replies
  • Hi friends I hope I can get some input from somebody out there My husband who has IPF has found the lung institute in Tampa they claim that they can slow the progression and improve quality of life with ...

Stabilised at my last LFT in January 2014

  • By Angie2205 · New reply 8:53 am
  • Journal · 8 replies
  • My. Last LFT on 16/01/14 showed I am stabilised - from the last LFT done in August 2013. Have another one in April 2014 and if thats still stabilised I don't have to see the doc for 6 months. I feel pretty ...

SOB and loss of bladder control

  • By mgg939 · New reply 7:46 am
  • Discussion in Living better with pulmonary fibrosis · 27 replies
  • I haven't posted in over a year. This week I had a most frightening experience and want to know if anyone else has had anything like this happen to them? I have noticed that when I am exerting myself ...

IPF and the flu

  • By dannyhop · New reply 2:09 am
  • Discussion in Diagnosis and testing · 14 replies
  • I am new to the IPF world. Diagnosed in January. I had been on 2 L/min Oxygen at rest and 4L/min for walking. Even though I had flu shot, I ended up getting the influenza B bug last week. I am over the ...

Toe clubbing

  • By Ladorna · New reply 12:46 am
  • Discussion in Living better with pulmonary fibrosis · 6 replies
  • Hi everyone, I wondered if anyone else is dealing with toe clubbing? Also is there anything you do to help with it. Thanks, Jacqui ...

IPF and TB

  • By vinodgan · New reply yesterday at 10:49 pm
  • Discussion in Diagnosis and testing · 3 replies
  • Hi my wife living with IPF since last one year started fever around 7 PM 99.2F since last one month.. The doctor advised her blood test for TB which came positive. Is there any body has TB along with ...

Helen Keller

  • By Lynsue · New reply yesterday at 10:04 pm
  • Journal · 2 replies
  • Here is an awesome quote from Helen Keller that keeps me going, hope you enjoy it too! "I am only one, but still I am one. I cannot do everything, but still I can do something: and because I cannot do ...

New to the community

  • By Maurarobertson · New reply yesterday at 9:55 pm
  • Journal · 8 replies
  • Hi I am a 19 year old attending my first year of college and I was just diagnosed with cellular and fibrotic non specific interstitial pneumonitis (NSIP for short). I am now down to 60% lung capacity ...

Traveling with IPF

  • By joyce334 · New reply yesterday at 9:42 pm
  • Discussion in Living better with pulmonary fibrosis · 3 replies
  • My husband and I along with the grandchildren have booked a cruise. He is diagnosed with IPF and uses oxygen. What will we encounter flying to Miami and cruising Royal Caribbean? Will they allow us to ...

Phase 2 Study Simtuzumab (GS-6624

  • By Smilebow · New reply yesterday at 8:46 pm
  • Discussion in Medications for PF · 2 replies
  • HI everyone, I've just been accepted three weeks ago for a second phase trial of Simtuzumab (GS-6624) I'm wondering if anyone else is on it or was on phase 1 of this trial, of course they may have changed ...

Traveling with PF

  • By hopefulday · New reply yesterday at 7:46 pm
  • Discussion in Living better with pulmonary fibrosis · 10 replies
  • My brother ( who has had a lung transplant), his wife, my husband and I decided to take a "bucket list" trip to Napa, Tahoe and Yosemite. Great idea, right? Well, it has been very challenging. We're all ...

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About this community

The Pulmonary Fibrosis Foundation Patients Support Community connects pulmonary fibrosis patients for support and inspiration. This community is sponsored by the Pulmonary Fibrosis Foundation, an Inspire trusted partner.


The Pulmonary Fibrosis Foundation (PFF) would like to remind visitors and group members that information found in the PFF Support Community should not be considered a replacement for a consultation with a qualified healthcare professional. Please consult your personal physician regarding any medical information that is shared on this site. Any views or opinions expressed on this site are not necessarily those of the PFF.