Hi everyone.

I have been on Esbriet with no issues for 6 years. It has done its job. Little or no progression. Last December I began to notice I could do a little less each day. This progressed to where even little things were exhausting. Walking wiped me out. Winded and SOB quickly. Had to give up golf. Exercising was possible through a…

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The Inogen G5 is a good unit. It has settings 1-6. Inogen tries to make you think that is LPM. It is not. Inogen won’t tell you the LPM which is a very deceptive selling practice. An engineer did a study and told me that the Pulse Mode at Setting 6 would supply the equivalent of 3.86LPM. The machine itself is very good and very reliable albeit…

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Allen:

I play the Dobro and piano and sing as much as I can with my cough. I’m a bluegrass junkie. It’s tougher than it used to be but a menthol cough drop or two or three usually helps. Singing and playing exercises the lungs and that, I’m told, is a good thing. I’m frustrated, like you, but I refuse to let my guard down and stop the… Read more

Joe:

I have been on Esbriet for 2 1/2 years. All the side effects were pointed out to me beforehand. I trembled taking my first pill but nothing bad happened. In my 1st summer on Esbriet I did develop a rash. But some Aveeno cream worked wonders and I got over it. My 2nd summer I never developed the rash so I am out in the sun a lot now.… Read more

To All:
Fatigue is an issue with Esbriet as is insomnia at night. I experience both, fatigue in the day and insomnia at night. The fatigue I can usually handle by keeping very active. I’m convinced the more active you force yourself to be the better you will do. I play golf 4x a week, swim daily, walk, and so on. My pulmonologist, who is,… Read more

Stuart/Ron:

Like you, I, too, follow the ECGC Green Tea follow up, however, it seems to have gone away, that is, until you gents wrote about it. My question to the Forum is, “Does anyone still follow this subject?”

I take one or two Teavigo 150mg capsules of ECGC daily. My pulmonologist at Mayo Clinic said it was OK. I also take Esbriet and… Read more

Steve:

I was told by my pulmonologist that it is quite common in other countries for people to be on Esbriet but not the full dose. We talked it over and he said tests have proven that a dose of 6 x 267mg works fine for many people. He suggested that as the standard in some countries like Japan. In my case, he asked that I take 6 at a minimum.… Read more

<p style=”text-align: left;”>Ron:</p>
That is absolutely great news. To my knowledge, it’s the 1st time we’ve heard really positive results from someone who began ECGC as a result of the study. Please keep us posted and, to all of the others who take EGCG, tell us your results, too. Good, bad or indifferent, everyone wants to know. It’s like a… Read more

I have read many emails today on EGCG and Green Tea. A number of you take it but no one seems to mention tests or results. I took it for awhile and it seemed to be a non-event. I noticed nothing good or bad. I mentioned it to my pulmonologist at Mayo Clinic and he suggested I not take it and simply stick to Esbriet because he is quite firm in… Read more

Hi all!

I’m back to a point where I could start taking EGCG again. I had to stop a few months ago to sort out a non-related issue. I know Charlene is trying to get a data assimilation plan started but that’s about all I’ve seen. Has anyone had any good or not so good results these past 3 months while on EGCG? Is the interest in it still… Read more

My experience with Esbriet and sun was like Mal’s and Tom’s for awhile. In other words, no problems. Then, all of a sudden, boom and my forearms incurred a rash of monumental proportions. The itching just drove me crazy. Until you get the itching you just don’t know how bad an experience it is. Sleep is reduced to nothing. You cannot stop… Read more

I have begun taking Decaffeinated EGCG Extract from Vitacost, 325.25mg of EGCG per capsule. I recognize this is 25% less than the Teavigo dose. My intention is to see if I have any side effects like a rocky stomach, etc. After a week, so far, so good. However, a nurse told me to take pills with food for maximum Bioavailability so this is… Read more

I have read the NEJM article and thought I’d try it. I ordered 750mg capsules of Decaffeinated Green Tea Extract from Vitacost.com who I think is quite reputable. This product has 325.25mg of EGCG. I haven’t taken it yet as I wanted to hear how others tolerated it first. I stay away from caffeine as I had Afib for years before it was ablated… Read more