Not everyone can take Esbriet or OFEV. I tried for over a year in 2018 and both drugs made me painfully ill. After discussing with my Pulmonologist, I stopped taking these drugs. It is now 2024 and I am still alive and my Pulmonary Fibrosis has been relatively stable for over a year. I don’t use supplemental oxygen but I do walk daily for 25…

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I talked to the family members about the deceased, as a person, and not as IPF patient/victim. I have seen several of my IPF peers die and have ceased counting because that depresses me.  It may be difficult to be an IPF patient for whom the disease is slowly progressing but we are all different and some more fortunate than others.  Hope this… Read more

I was diagnosed nearly five years ago and my wife was present.  We knew from the radiologists report that I had Pulmonary Fibrosis.  Part of the testing, to determine if eligibility for OFEV or Esbriet, required testing by a Rheumatologist, who both of us knew.  He was harshly candid in his assessment and we wondered if we should stop at a… Read more

I am almost 5 years post diagnosis and learned several things in Pulmonary Rehab early on.  First, the stomach gets first demand on oxygen, so eating can effect your oxygen level. I don’t snack between meals and attempt never to eat after 7PM.  I sleep soundly for 8.5 to 9.5 hours nightly.  I also take a daily nap in the early afternoon lasting… Read more

I have several people in my support group who are now 7+ years past diagnosis.  I am in my 4th year and am not on either Esbriet nor OFEV because my body could not tolerate either drug. From my personal experience, I believe one must participate in pulmonary rehab and exercise daily.  A positive attitude also helps.  Those people in my support… Read more

I have off Ofev and Esbriet for two years and have found that sugar-free menthol cough drops such as Halls or Walgreens, reduces the cough and the frequency of the cough.  I carry these cough drops in my pocket so I can take one as soon as I feel like a cough is coming. I did not have success with commercially available cough medicines.

I am one of the people who could not tolerate Esbriet or Ofer; I was on both of them, individually for over a year and was so sick that I told my doctor (MD Pulmonologist) that I would rather be dead than to continue with either medication.   That said, there many patients in my support group that successfully take these medications and… Read more

I have not taken Esbriet or Ofev for nearly two years so I can’t blame drugs for lack of appetite nor for increased sense of smell.  Last evening, I visited my son’s home and my granddaughter had several aromatic candles burning.  Even though the scent was mild, it seemed very strong and objectionable to me even though the other adults did not… Read more

I tried to take Esbriet and Ofev, separately, over a time span of one year.  Both medications made be very ill, uncontrollable diarrhea, extreme fatigue and more coughing that normal.  I finally told my Doctor that I felt the treatment was worse than the disease and so he agreed I should stop taking it.  This is just me because others in my… Read more

I have found Pulmonary Rehab at my local hospital to be very helpful.  A side benefit of these programs is learning how hard you can push yourself without causing undue stress.  Daily exercise is good, my goal is 5000 steps daily unless the outdoor temperature is below zero. If a support group for PF is available, join it.  You will be able to… Read more

I avoid processed sugars, as well as artificial sweeteners, but it is difficult to totally eliminate them.  Last spring, I added cinnamon swirl bread to my daily breakfast diet because it tasted so good. When I had my quarterly blood test. I found that my Trigliceride count had dramatically jumped.  I replaced the cinnamon swirl bread with oat… Read more

My pulmonologist prescribed Omeprazole (over-the-counter drug) at time of diagnosis three years ago;  this helps control GERD nevertheless I had occasional chest cramping.  His opinion is that this could be skeletal based pain and not IPF. I continue to take this medication because GERD can be as painful as the chest cramps. I find that drinking… Read more

I have found that eating only small meals, and more frequently, helps.  If I do eat a large meal, not only am I uncomfortable but also do not sleep well.  My weight loss has been minimal but significant when viewed over a three year period.  Everyone is different so do what works for you,