Intro

[Terri]

Coughing is a very common symptom with ILD and PF. I have ILD and cough a lot during the day. Some days are worse than others. I take a teaspoon of honey to keep the coughing to a minimum, especially at night. It usually works. The dry winter air makes the coughing worse, as do some foods that tend to aggravate my throat, such as salty foods. We have a humidifier attached to our furnace, which helps. I’ve been on Ofev for 5 months. I won’t know until my next CT scan next summer if it’s doing what it’s supposed to. I’ve had some side effects, esp. nausea, but I think the benefits will outweigh the negatives in the long run.

[David Bennett]

A usually non-productive cough is symptomatic of IPF. Why is your daughter opposed to you taking Ofev? There are only two drugs proven to help if your disease is progressing.

[Larry70]

Is your RN daughter very knowledgeable about Idiopathic Pulmonary Fibrosis? Sadly, many doctors (even pulmonologists) don’t know much about IPF and ILD – and this disease can often be misdiagnosed and not treated properly. If you have IPF and your MD is considering an anti-fibrotic, then you need to listen to your MD. The only other option is a lung transplant (and you will still likely need to take an anti-fibrotic like OFev until you get the transplant)

[JD]

I realize that coughing is a major symptom of IPF, but I think *much* of my coughing is coming from something else. Within seconds of eating/drinking *anything* (even honey), I cough. It’s in my throat, not lungs. And my guess is my daughter is against Ofev because she’s dealt with a couple patients on it who weren’t doing well. Could also be some denial in there. She’s an only child, and we’re very close.

[JD]

Oh…I also cough when I *get out* of the shower. (Not while I’m in it). Weird.

[Patricia Meadows]

Hot moist air doesn’t agree with me. It makes me feel suffocated. Occasionally when I’m washing pots and pans I have to step back while running the hot water to fill the sink. Some members of my PF Support Group feel better when the air is humid, others don’t. I cough a lot from post-nasal drip so take antihistamines year-round. The allergist I went to said I have “environmental allergies”. When I’m in the country I cough much less; as I get into the city the post-nasal drip starts again and so does my cough and need to clear my throat. Embarrassing if I’m in the company of others, but they understand I can’t help it.

[CHVR]

Hello to All: This is my first time to post a message. I was diagnosed six years ago with IPF…late November 2017. I have been on OFEV since mid-December 2017. I took about 9 months before the full effect of the side effects kicked in for me. My big issue is going to the bathroom frequently. I probably spend 4 to 5 hours, out of every 24 hour period on the toilet. This includes a trip to the toilet around 3:00 AM, in the middle of the night. Everything moves very slowly, so I might be on the toilet for 45 to 60 minutes for one, two, or three of those bathroom trips.

This has made traveling away from the house difficult, if I go off for more than 60 to 90 minutes. So, I try to do several errands at a time, such as two doctor appointments, a trip to the drug store, the grocery store, the bank, etc. My goal is to avoid having to use a rest room when I am away from home. To be able to do all those errands in one afternoon, I start taking imodium the night before, so that before I leave the house, I will have 3 to 4 imodiums in my system.

I too do a lot of coughing, especially in the mid-mornings for about an hour. My ENT doctor says it is post-nasal drip and my hyatel hernia. I take nexium to avoid heart burn, but I have to sleep propped up at night to avoid acid reflux.

I do think that OFEV has extended my life! It is supposed to slow the progression of the disease by 50%, and I think it is doing every bit of that. I feel blessed, because I could have something much worse…ALS, pancreatic cancer, dementia, etc. After 6 years, I am thankful that I am still here. I am on oxygen, with a stationary concentrator at home with a 50-foot cord, and a portable device to run errands.

Does anyone have a suggestion as to how I could reduce these frequent bathroom trips??? Thank you, Charles Van Rysselberge in Gainesville, GA

[Barbara Walter]

Why is your RN daughter opposed to Ofev? Is her area of specialty IPF or Pulmonalogy? I’m an RN with 50 years experience and a Masters Degree and my research into Ofev found that studies show that is has a significant impact on slowing the progression. It does have side effects that varies with intensity among the users. In addition Ofev or Pirfidodone, treatment for reflux’ and general healthy behaviors including pulmonary rehab. help reduce the progression of the disease. Just curious. .

[JD]

Guessing it’s partly because the people she’s dealt with who were on it weren’t doing well, and partly because she doesn’t want to believe this is happening.

[Barbara Walter]

OBTW I have IPF and take Ofev 100mg twice a day. I was diagnosed 3/22.

[Brent Fain]

My unmedical opinion is that IPF is a very individual situation! It acts differently for each person! Diagnosed ILD Nov 2016, confirmed IPF July 2017. So I just passed 7 years. I have a friend that was Diagnosed 2 years after me is now on new lungs for 3 years. Duke says that I breath good due to being in shape when diagnosed. I have 70 percent lung capacity but they say my lungs operate at 80 efficiency due to my physical regiment. I go to the gym 4 days a week and it is 1.75 to 2 hours workout without oxygen! I have never had a cough until I got covid this November! I was put on OFEV in 2017 at 150mg twice a day. It made me sick in a week. It was reduced to 100 mg twice a day and I could go 6 weeks before I would get queasy! It also reeked havoc on my acid reflux! This past winter I went to Florida and decided not to take OFEV while camping for 3 months! Oops, I did not start it back when I returned home. Went to Duke last month and my breathing and pfts were flat line from last November! Told the transplant doctor that I hadn’t take OFEV for a year. He said that it didn’t hurt me, so I don’t take anymore! Also my reflux rwally improved and I dropped the Dexalant for my acid reflux and it was approved by the doctor. I think the key for me is that I work out religiously, eat good and on the protein side, take vitamins and maintain a healthy weight. I also think genetics plays into the scenario! I am 71, 5’10”, and weigh 175 lbs. I hope this gives you some insight and remember that IPF is different for each of us! God bless and Merry Christmas!

[JD]

I start each day with a 2mi walk, and I play the drums for 2 churches and one gigging band. 66, 5′ 9″, 175lb.