Tom Nicholas

You can stay on Edbriet as long as you have a doctor to prescribe it….. or until your money runs out.

I’ve been on Esbriet for 3+ years. My understanding is the sun effects happen in the first 3-6 months. I did have a problem with loose stools as I went to the full dosage. A tip given to me on this site resolved vthe issue. I had probiotic yogurt every morning for 2 weeks, problem solved. I still have the yogurt several times a week. I used…[Read more]

I receive my order next week. While looking at the many products available on Amazon or eBay, I did notice a consistentcy of the front labels prominently displaying, for example, 1000mg. While looking at the ingredients and dosage, most products show similarly 45% EGCG per capsule. I assume this to mean, if it is a 1000mg capsule, then I’d be…[Read more]

I was not sure if I wanted to respond to this thread. After thinking about it awhile, I remembered how either talking or writing about things was good therapy. Maybe my story might encourage others to share their stories, and we would find, we are not so all alone in our thoughts nd our journeys.

My IPF story started almost 4 years ago. We…[Read more]

Somehow, I’ll try and manage to be brief.  Good luck on that!

My mother died of pulmonary fibrosis over 20 years ago. It wasn’t called IPF in those days.  My brother and I have both been diagnosed with IPF…me, for about 3 years and my brother about 18 months.  My father was my mother’s caregiver.  He lovingly provided her with dedicated car…[Read more]

Michael ( @mikepapa ), thank you for the kind words.  Regarding Esbriet, initially as we increased the dosage, when I got to 3 pills 3X a day I started having loose stools.  In fact, I called it “battery acid” diarrhea, it burned like heck.  Thank goodness for this site, as many of us have had similar experiences, and there is no need to “r…[Read more]

Michael…I have been on Esbriet for about 2+ years.  While waiting for my initial Esbriet prescription, my pulmonary doctor had me on NAC and asked me to continue NAC after the prescription was filled.  I am 69, not on oxygen, and seem to be (at the moment) “stable”, after losing about 1/3 of my lung function.  I am not on oxygen. I have done co…[Read more]

Thank you Piet…not so sure “amazing”..I think more “lucky”.  I too get very tired and am exhausted after our hikes…  With our windows closing the best we can do is keep fighting and do as much as we can and be satisified with that result… Thank you for your comments!

My wife states that I am a “man of many hobbies”.  I guess she’s correct, but there are never enough new experiences for me.  Some of my hobbies are Amateur Radio (KJ4JIA), though I am pretty much inactive, I am currently learning to build crystal radios.  Virtually everyday, my wife and I walk about 2-4 miles up and down these steep mountain ro…[Read more]

I now respond, “I am stable, and that is the best I can be.”

Charlene,

Thank you for the “welcome”. I have been reading Pulmonary Fibrosis News for some time now.  I am surprised I never registered.  I have been Esbriet for about a year now.  I feel I have been stable, but I go in next month for my annual testing, so I’ll thankfully have some data to hopefully back that claim up.  during my last vis…[Read more]

Shaw,
You’ve come to the “right” place…you probably realize that fact now. this group will help you through just about any problem, give you advice, and give you support…we’re all I this together. I had no side effects with Esbriet until I went to the full dose…3 pills at each meal. I take my Esbriet half way through the meal…nothing…[Read more]