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To all – regards serrapeptase – you need a higher dose than you might think because of how it is measured )SU’s). I worked up to and maintain 720,000 SU’s nightly.

Part 2 and very important. If you are taking real serrapeptase never take it anywhere close to other pills – NEVER. Pretty much the same for food. Serrapeptase dissolves dead protein…[Read more]

Wow I am happy that you guys can cough up the mucus. When I only had scarring on my left lung, yes I was able to cough up mucus. But it’s been like a year now that I have a very strong dry hacking cough that feels like I have two souls inside of me. And it hurts really bad because, I will cough for hours and hours. I also have now developed sort…[Read more]

Thank you for your feedback. I hope the best for you. Still will be doing more research to the side effects and decide if they out weigh the benefit.

Thanks for your feedback. I have a few weeks to decide whether to take the drug. I will be looking for to more feedback from more Esbriet users.

Hello Bob,

I too take 10mg of prednisone daily plus an inhalent of flovent 110mcg 4 times per day. It used to do good, but not so much anymore. My doc now has me on a nebulizer 3 times per day. It does pretty good for awhile as long as I don’t lean over. Leaning over gets me big time. Next month I have my next breathing test. I am almost afraid…[Read more]

Hi Jim

IPF sucks. I was diagnosed 5 years ago(at 55) and have been on Esbriet for 4 years.  Very little lung decline🤞.  Initially had some stomach upset and sun sensitivity lasted a bit longer but now manageable with sunscreen(mostly on hands) and a big hat when I golf.  No idea if Esbriet  has helped but will definitely will continue taking it.…[Read more]

Hi Jim,

You ask most pertinent questions. It is accepted that there no cure for our complaint, and the extension to our life by taking either of the two treatments against the side effects is questionable.

I started a thread asking for experience of the transfer from OFEV (nintedanib) to Esbriet (Pirfenidone). I received many replies indicating…[Read more]

Hello
I am a healthy 65 year old male having been just diagnosed with IPF in February of 2022. Just had second visit with pulmonologist and he wants to begin the drug Esbriet. After reading about the side effects of this drug, I am concerned how my quality of life will change and if it is worth it. From what I read there are only 48000 people…[Read more]

Randy, I’m only on 3 but I coughed all the time and had 7 lung infections in a year. My pulmonologist decided to try me on 10 mg of prednisone daily and 250 mg of Azitromiacin (?) three days a week. It has been almost two years and I’ve not had an infection nor do I cough all the time. I rarely cough. I even got by after having Covid. It cha…[Read more]

Hello Linda, IPf is a terrible disease that is very unpredictable and effect different people in different ways. I was diagnosed over 2 years ago but I have feeling I had it before that and was told it was emphysema. I started out right away on oxygen because one of my lungs was already gone. I was able to get by with  4-5 l. Then as it worsened…[Read more]

Thanks so much for your reply!  Very much interested in your research for people who have PF and run.  You sound like me we are willing to do whatever we can to keep running and stay active.  You asked about the odd symptoms that I attribute to IPAF.  I find that after I eat or get short of breath I can’t talk.  My vocal cords lock up someho…[Read more]

Thank you, Steve.  Good to know we all have this group and God!

Hi Pamela, I just wanted to interject and point you toward a columnist on my team who writes for Sarcoidosis News. Sarc is not PF, but does have similar features in that involves inflammation and change in lung tissue (granulomas in that case). Calvin has pulmonary sarcoidosis and is a runner. He is training for a marathon right now 🙂 His…[Read more]

Yes indeed! Here is an article on our site about the generic release. Keep inquiring with your local and specialty pharmacies.

Hello Lystra,

THANK YOU for your response and insight, you’ve helped answer many questions where I wasn’t getting straight answers from doctors.. of course they probably don’t have lung fibrosis, so it is wonderful to be able to get an answer from someone who can relate.

It’s interesting that you also have lung fibrosis caused by Sclerod…[Read more]

@kathleen

Hi Kathleen,

I know what you mean, I try to explain to my wife from a “what’s coming perspective” but it is mostly only us here that know the true inside story. Grief has 6 general stages so I cover it by prayer, reading the Bible and knowing I have this great Hope…

Stay well…
Steve

Hi Jackie, i did not even know that they had 200 mg for OFEV. I have been on 150 mg for about four years. I to get sleepy in the late afternoon. Sometimes i just fall asleep watching TV. But i am on my ninth year and lately the way i have been doing, i probably won’t make it to 2023. If your pulmonologest was Dr. Zisman, you are lucky that he…[Read more]