Starting Esbreit (Pirfenidone)

Thanks for your reply. I know Ayr brand and will get some gel to keep on hand.

How is he doing on Pirfenidone? I may soon start this drug. It is one of two anti-fibrotic drugs to slow progression of pulmonary fibrosis.

83 year-old hubby is doing fine, it seems like — and thanks for asking. He only had slight diarrhea from who-knows-what a few days ago, but a spoonful of Imodium took care of it, thankfully. I wish you the very best on all this! Let us know how it goes.

Hubbs has had some congestion the last few days, as well as the continued abdominal "tightness" (which may be partly due to kyphoplasty surgery on his spine 6 months ago). Today, when he complained of feeling "weak" (one of the side effects of Pirfenidone), I suggested that he skip one of his 3 daily pills today, but he didn't want to do that. He continues to go to his Pulmonary Rehab twice a week, and has another month to go. Uses 6L oxygen with a tank they provide there while walking around track. Increased oxygen from his concentrator to 4L at night, and his daytime portable oxygen concentrator from 2 to 4L. It only goes to 5L What next?? Should we plan ahead and get a POC with a larger capacity of 6L and one with a larger battery (current Rhythm Health only lasts 2 hours on 4L). Thanks for any and all suggestions!

Am just starting oxygen now so have done some research:
1) Continuous flow vs. pulse flow concentrators
At Mayo they only measure in continuous flow (Liters/min) which is considered the gold standard...
Pulse dose (PD) oxygen delivery is based on breathing and inhaling, which customizes your oxygen delivery to your breath rate. Continuous flow (CF), on the other hand, delivers oxygen at a constant adjustable rate, indiscriminate of the user's breathing, measured in liters per minute.
2) Lighter weight portable concentrators like Inogen are pulse dose. But they are not able to meet higher oxygen needs which would require continuous flow portable. These exist but they weigh more ....10lbs example.
3) Nighttime at home concentrator will be continuous flow
4) One should test the portable oxygen concentrator with one's oximeter during activity to see if it keeps one in the "safe zone"
Talk to you doctor about it all.

Last night (Friday), hubby (while on 3L oxygen watching TV) had a nosebleed after his second dose of Pirfenidone, the second pill of the day (with snack), and before dinner. I suggested that he skip his usual third dose (with dinner), and he had no more problems after using some Ayr gel for his nose. He decided that tomorrow, he will cut back to two pills again-- one with breakfast and one with dinner, and see how that goes. He also upped his oxygen to 4 L when he found his pulse ox rate was only 93. It raised him to 95, where it usually is. He skipped his daily home rehab workout, but did run a couple of errands in the afternoon (with his POC), and didn't mention feeling "weak" like he did yesterday. He's only eating 2 small meals and one snack a day due to lack of appetite and feeling "full". Any other suggestions???

Saturday, Hubbs was seemingly okay (no nosebleeds or diarrhea) with cutting back to just 2 of the 3 doses of Pirfenidone. But then today (Sunday), after just one Pirfenidone at breakfast, the diarrhea was back (treated with more Imodium).
I wonder if he's going to have to stick with just one pill -- only 1/3 of the prescribed dose?? It's a roller coaster!

Vic and everyone, I just want to update what's been going on. Hubby's tolerance of the Esbriet has improved, and as of now things have smoothed-out to the point where there seems to be no more roller-coaster effect -- even with the full 3 pills per day dosage.

The good news is that 83 year-old hubby's had some lung improvement shown on CT scan, and has been able to stop using daytime portable oxygen concentrator on a regular basis since starting Pirfenidone (Esbriet).
The strange news is that his only recurring side effects from the Pirfenidone he's been taking for several months now seems to be sneezing fits (usually accompanied by slight runny nose) after dinner. Sounds like Gustatory Rhinitis from what I've researched.
Have any of you experienced this, and are there any remedies that you know of?

Hubby has been on the full dose of Esbriet (one tablet 3 times a day) for several months now. Has had to cut back to 2 per day due to occasional nosebleeds, but lungs do show improvement on CAT scan. Has had few (and minor) nosebleeds lately, but still some sneezing "fits" after dinner.
But after dinner tonight and the fairly routine sneezing, he had the worst nosebleed yet (after only one tablet with dinner -- because he missed his breakfast dose). So now we're thinking he might have to cut back to only one tablet per day (possibly just with breakfast) and/or eliminate this med entirely.
Not sure what to do. Any ideas or suggestions?