I can't answer about exercise, as I was accidently found to have IPF last fall, and I am asymptomatic and can still walk 3 miles a day, +/-like I have for a long time. Best of luck.

Whatever you can do is not wrong. Keep walking with your dogs. Being active and getting out of the house is helping me. My favorite exercise is swimming. I use a tank at the side of the pool and a 50-foot breathing tube. I don't even bring my portable concentrator outside because I don't want it to get wet. I turn the oxygen up and I just paddle around. It is good exercise and helps my arthritic pains lessen. You aren't doing anything wrong. Please don't be hard on yourself.

steve, I wouldn't expect anything to happen in two months! I took it for about five years. It's hard to answer your question exactly, but looking back, my breathing is no worse than it was several years ago, which is not what one would expect. I feel a lot better. I guess it all happened gradually.

I do also take other supplements. Black seed oil (please look it up) helps me to feel better overall, without being specific. Lots of vitamins and minerals,and NAC which keeps my cough loose. The serrapeptase was expensive, but the price varied depending on where you bought it. I found iherb to have the best prices.

Gentle exercise is very important also, I have come to realise. I used to think "I can't exercise, I get too breathless". But I have learned that being breathless does no harm, even though it is unpleasant.

If you would like to correspond with me further, you can email me: julwood at iprimus dot com dot au (safe way to put your address online). Obviously I can't/ don't give medical advice, but I'm happy to share what worked for me.

Is this person still alive? It's been almost 5 yrs. now.

This is @1jonwilcox, I had PF diagnosed in 2009. I am now passed the common life expectancy for PF. I am also a type 2 diabetic with mild high blood pressure and neuropathy on my right side. In 2007 I had a very mild stroke, affecting my optic nerve and the left side of my face. At the same time, I had a double bypass. The stroke got me to the hospital and saved me from a heart attack. They discovered the need for the bypass when I went in for the stroke symptoms.

I suggest you do deep breathing exercises. Breath in slowly until it is impossible to inhale anymore even if it is mildly painful. Hold it as long as you can. Then breath out slowly thru pursed lips until you cannot push out anymore. Do this 5 times a day, the last as your head hits the pillow. It helps me clear my brain and go to sleep, You can use a machine in addition and my doctor says to do that 10 times a day. When I do it, I do 10 times in succession. This has helped me immensely. My last CT Scan showed the fibers in my lungs are gone, but I still have COPD. My lung doctor says he has NEVER seen fibers disappear in any other patient. I have nasal congestion, mostly in my left sinus, which drips into my lung. Every night I use NeilMed Nasal Rinse squeeze bottle to clear my sinuses before bed. I also use a Fluticasone Propionate nasal spray and then Symbicort 160/4.5 inhaler with an AeroChamber plus Flow-Vu devise.
Good luck. Worry only about that which you CAN control. Jon Wilcox

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II am Paul and I am taking Perfinidone 9 capsules daily. It has slowed the progression. I have a problem breathing after any exertion. Nausea and fatigue are bad side effects.

Hi, @paulallen, and welcome to Mayo Clinic Connect. Thanks for sharing what's helping with your condition.

Have you found any ways to counter the medication's side effects of nausea and fatigue?

Fortunately no nausea. I have not found a way to combat the fatigue. It is with me all the time. I forgot to mention in my last post. You must avoid breathing anything but clean air. No breathing near smokers (hold your breath as you walk by them.), or in rooms where smokers have smoked, no perfumes, pre-shave or aftershave. Only paint with Zero Voc paints and any other type of painting, staining, etc done outside and downstream in the air flow, or if indoors, with an open window on either side of the work area and a fan to exhaust the hazardous air. Also,stand on the windward side of the gas pump when filling your car, etc.

I have the fatigue but not the nausea. Fatigue seem to stay around.