Connie Lum

I am one of 5 children, 2 older sisters and 2 younger brothers. 3 of the 5 have IPF. One of my brothers had a bilateral lung transplant 4 years ago. He did smoke, the other brother, the youngest has never smoked and is on oxygen 24/7. I have no symptoms and never smoked. I am the only female who has been diagnosed, my older sisters do not have it.…[Read more]

Hi Charlene,

My younger brother had a double lung transplant going on 4 years in July , he was 61 when he received the lungs. Doing well, he would have died if he hadn’t. Because of this all the siblings had been tested. Out of the other 4, 2 of us were positive. My youngest brother, currently 62, is on 24/7 oxygen at 4 lpm at rest. He suddenly t…[Read more]

I was diagnosed with IPF a little over 4 years ago. I am on Esbriet and have no symptoms. I was tested for IPF because my brother had it , he was diagnosed in April 2018 had a transplant in July 2018. My other brother and I were positive for IPF. I have no issues but my brother has a steady decline . I was the most active of my brothers. I…[Read more]

Hi All,

I noticed a loss of appetite that comes and goes. I’m on Esbriet. I noticed an increase in my sense of smell and I don’t have an aversion but I don’t enjoy my wine anymore. A real bummer. Lots of food taste very salty too.  I also noticed that when I’m done eating I’m done. I used to eat everything on my plate but not anymore, i…[Read more]

I’ve been on Esbriet since October 2018. Initially I had to reduce dose age for Heartburn reflux issues but was able to take the full dose relatively quickly. I have had very few side effects and none that prevents me from my regular activity. Unless I have a increase of liver enzymes or the drug is no longer working (i.e. worsening PFT results o…[Read more]

Hi All- I am 67. I was diagnosed mid 2018. I chose Esbriet over Ovfev after reading posts from others , I didn’t want the GI problems. I had a slight reaction to sun exposure in form of a rash but I protect myself and have no problem. I did have to cut back occasionally while taking the 9 pills a day. I gradually was able to take the full dose a…[Read more]

I retired in August 2017 after working in the neonatal intensive care unit for 35 years. Exposure to numerous xrays taken for my patients. We either moved away from the bedside or wore a protective apron. There were many other exposures. My parents smoked for years. My dad was diagnosed with COPD (could this have beeen IPF?) he ended up on oxygen…[Read more]

Hi everyone,

I live on the west coast, about 1.5 hours east of San Francisco. It gets hot this Far East but not humid. I am on Esbriet for almost a year. Tolerating it well so far. You would never know I had IPF. I try and walk 5 miles a day in the morning. I have noticed that I’ve sweat more lately. I usually don’t break out in a sweat until aft…[Read more]

I have been diagnosed since June 2018 and on Esbriet since October 2018. I am currently asymptotic. I have noticed a lack of appetite and interest in food. I seem to have a heightened sense of smell at times and the worse part is I don’t enjoy wine as much! I believe it is due do the medication.