I am a woman of 83.  I was diagnosed 3 years ago.  I tired OFEV and it was hell.  I had no life.  I was very tired and had bouts of explosive diarrhea and was limited to going anywhere. I took boxes of  Immodium.  I found a new pulmonologist and he took me off OFEV.  I almost felt like my old self again.  My O levels are still good and I do… Read more

I was taking OFEV for a year.  Was diagnosed  3 years ago.  I am a woman, 82 years of age.  The OFEV was destroying my life.  Went to a new pulmonologist and he took me off altogether.  I feel near normal.  That was 2 years ago.  I made the decision to have a better quality of life than constant explosive diarrhea and chronic fatigue.  Have… Read more

I am so interested in your comments.  I was diagnosed with IPF 3 years ago.  I was taken off of OFEV as I had no quality of life.  Sleep and IBS kept me at home.  I am still worried if I did the right thing but I am alive.  I am 83 old woman.  Have had one exacerbation and it was frightening.  I have a concierge pulmonologist but I still feel… Read more

Thank you for the story about your father. It was uplifting and he seemed one hell of a guy. He put up a good fight. It’s so easy to just give up. I know this is ridiculous, but it comes as such a shock when you are told your days are finite. I am 82 and was given the ‘SLAP’ about two years ago. The side effects from OFEV meds were… Read more

I can not believe how long it has taken some to even get a diagnosis. I went to the doctor one day, had an ex-ray another day, they saw something, got a CT scan and was told I had IPF. I immediately went to pulmonologist and he confirmed diagnosis. I was immediately put on OFEV. I can only stand 200 mg a day. That was two years ago. … Read more

Strangely enough I just watched a biography of Jackie Collins, a women’s book author.  I had never read her books or realized how famous and wealthy she was.  The point of all this is she had breast cancer and never told her children the severity of the stage she was in.  She went back to London to visit her children and left saying “I’ll see… Read more

I do not understand this warning to not rely on internet as it is outdated. I was diagnosed in May 2020 with IPF. The first time I saw my general doctor he told me I had a diagnosis of IPF after ex rays and Cat scan. He said the prognosis was 3-5 years. I then went to a pulmonologist who concurred with diagnosis and said 3-5 years to live. As I… Read more

If he likes to hoover, you must be English or Canadian. In the US we vacuum. That makes me to out of breath. Wishing you all well. Jackie

So interesting to hear from you. I am an 80 year old woman coming up on a year without symptoms. I am very tired these days and go in for breathing tests in April. My doctor who has done biopsy (not thru lungs) said he was 80% sure I had IPF. He can hear the crackles or whatever. He was on Pulmonary research at UCLA for years and I am sure… Read more

Thank you Dr. Don. When you talk, I LISTEN! I now understand the reluctance of physicians to make a firm diagnosis, but I learned and was diagnosed in 5 days. Though at one time the pulmonologist said he was 80% sure I had IPF. I couldn’t understand the hesitation to be firm on his diagnosis. Every time I see him I think he may tell me… Read more

Is it your husband that has IPF? AND you are doing the scouting and research? BRAVO to you. My husband does not seem at all interested in this. I guess he wants to live one day at a time. There seems like so much to learn and I’m too tired to do it. Research is my style, not his. I feel I have a good doctor. I still feel really well… Read more

These comments shore me up so much. I still vacillate from complete denial to resignation. I also dropped down to 100 mg of OFEV. That added to the quality of life and some days I feel jubilant. I figure I must have an answer and in reading your comments I realize there isn’t one. I get so tired. Still not on oxygen and my oximeter says… Read more

I am an 80 year old female who was diagnosed with IPF April, 2020. I am still feeling pretty well. I am off the 150 mg x twice a day. I take 100 mg 2x a day. The quality of life was not worth the larger dose. Do not know if this will keep anything from getting worse, but it is a chance I am willing to take. Numbers have remained… Read more

You are a weath of knowledge and hope. Thank you for sharing.

Let me know how you do. Jackie

I was doing OK on 100 mg 2x a day. My diarrhea was manageable. was a bit queasy and all the rest.
Was on 100 mg for two months, so I “thought” I was adjusted. Everyone is SO different. After a few months of 150 mg, I find it intolerable. I am 80 years old and have been in the best of health. Nothing, no stitches, broken bones, except I… Read more

Gosh, I hate to be a quitter. But at my age, what is the sense of living a long miserable life? This is such a unique quandary to be in. If I was in my 40s or 50s I would do anything to live. I have barely touched the misery of IPF. Taking pills that make me feel like I have a bad case of the flu everyday seems absurd. How do you know if… Read more

I am taking OFEV 150 mg a day. Have GI problems, weak and tired. Bouts of stomach pain. In other words, I have little life. Somedays better than others. Two years ago I hiked up Machu Picchu. Oxygen levels are still in the 90’s. No coughing and can still walk. However, at 80 years old, I have to be realistic. I have asked doctor… Read more

WHEN MY MOM WAS DYING OF LUNG CNCER, HOSPICE ANSWERED THESE QUESTIONS.

Oh how I hope they come out with a drug that does not make one sick. I’ve only just started on OFEV. Hoping it gets better. I have good days (not normal like old days) and some “(this is a help?)” days. I am still in a “questioning” phase. Why me? Which is exactly what my mother said when she was diagnosed with lung cancer as she was… Read more

HiJay, I am anxious to hear if you got your questions answered. In your case, I think NO news is good news. I went in because of chest pain and within 48 hours after an ex-ray and CT scan, they told me my diagnosis, which was IPF. You are so young. Upon reading about lung diseases and also watching Utube, I found there are over 200 types… Read more

Thanks for your input.  It helps.  Just not not feeling alone and that others are lasting a few years is good news. My first doctor was so cold and so matter of fact.  Three to 5 years to live.  No Hope.  A change of doctors has helped me and he got me on meds immediately.  At my age I can’t hope  for too much, but having been given an end… Read more

Thank you for your reply.  Am I the only one hoping the doctors are wrong or they say I have been cured?  I just can’t believe this has happened.  Magical thinking?  The more I know, the better. Jackie

Would like to know if the side effects from taking OFEV subside or lessen in the long term.  I am on 150mg twice a day .  I seem to have the diarrhea somewhat under control. Indigestion pain  and burning pain in stomach are debilitating.  I am struggling with eating too much or not enough with the food to keep side effects at bay.  Can not… Read more

I know everyone is different BUT a question.  I was diagnosed with IPF in April this year.  Beginning stages and I have no cough as yet.  Is there a timeline when this begins?  Doctor put me on OFEV and I am now taking 150mg x2.  So many side effects, I don’t know if I can do this.  Trying to eat right, not too much or GERD kicks in.  Does it… Read more

Hi Kate.  I was diagnosed in April of this year. No cough or oxygen yet.  I am VERY tired and do not know if it is IPF OR the meds OFEV?  My oxygen rarely drops below 90’s.  I can walk for 15 minutes no problem but I feel like a sloth.  NO uphill.  With the Covid, CA fires and smoke and heat at 102 I am house quarantined.  Wondering if you were… Read more

Petting my outside cat set off an asthma attack.  Went to doctor and got an inhaler.  Did not get better. Dr ordered an exray and something was seen.  Next got a cat scan and was told I had IPF, go to pulmonary dr.

I did.  He confirmed the diagnosis and said come back in two weeks.  Scheduled lots of blood tests, pulmonary

tests.  I asked… Read more