[Lou Body IV]

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 cardio pulmonary program but my O2 stats started dropping. I more or less stabilized at a level where I could do many things but not all. Then, I got Covid again so mild I could hardly feel it. No temp, no nothing. Took Paxlovid and was better almost immediately. 3 weeks later all my energy disappeared and it’s a big effort to do anything. Home Health Care says I’ll recover but it will take a long time. Every day with PF is a battle. You have good days and bad. I wish it were different but it isn’t. One day every one will hit a wall and lose strength and power rapidly. Just keep fighting and do what you can. Beating this disease means getting as many years as you can.

Lou

[Lou Body IV]

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 not putting out that much oxygen.

[Lou Body IV]

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. I continue to take 7 267 mg pills per day every day. The only issue I can think of is waking up at 4 or 5 am with insomnia when I wanted to awaken around 6:30. I can deal with that. I hear many war stories about OFEV but not many about Esbriet. Try it. I think you’ll be fine. I’m 82, by the way.

Lou

[Lou Body IV]

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, perhaps, the smartest doctor I’ve ever met, has said 6 267mg Esbriet daily is the minimum effective dose. I take 7. I don’t like the drug but I take it. I hope it is working.

[Lou Body IV]

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. I actually take 7 and he’s happy with that. I had a big problem with 9 so cut back slightly. In his words, “Take what you are comfortable with but not less than 6x 267mg per day. Hope this helps. Lou

[Lou Body IV]

Ron:
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 dark hole when this sight is not lit up with continuous, as opposed to infrequent, posts.
Thanks,

Lou

[Lou Body IV]

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 his opinion that Esbriet works and, more importantly, works for me.

I have been waiting patiently to see if anyone has taken EGCG and then had any tests done to confirm that it is helping. Unless I’ve missed something, I don’t believe there have been any concrete results. My feeling is that if a few of you pioneers out there are having documented success, then we need to know. Results count more than taking it and hoping it works.

Lou

 

[Lou Body IV]

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 high or has it waned for some reason. Thanks,

Lou

[Lou Body IV]

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 itching every second you’re in bed. It took 3 months to get over it. That’s 3 months off Esbriet. I’ve learned many people don’t get a reaction right away. When they think they are immune, all of a sudden it hits and it is awful. Please keep my experience in mind and don’t for a minute let your guard down. I wear sleeves, knee high socks and a bucket hat now whenever I am in the sun. I will do anything not to have that itching, raw skin.

Lou

[Lou Body IV]

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 how I’ve taken EGCG. Dave wrote that he read to take the dose with water and no food. Is the nurse all wet or does it really matter how it’s taken? I take Esbriet and wouldn’t dare not take it with food.

[Lou Body IV]

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 2x 10 years ago. I have taken ESBRIET since last September. Currently, I’m OK, out of Afib and still very active and not on oxygen for Familial Fibrosis. I have a sister who has FF also and she takes Azithromycin every other day. She is on oxygen full time but has improved with much less coughing since being on AZT. Our deceased mother was the first one in our family to have PF. People with Lung Fibrosis grasp at any straw, as they should. As soon as I hear that people tolerate EGCG OK then I will try it. So keep your comments flowing on this subject. Thanks, Lou

[Lou Body IV]

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 music. If you are singing to people, or in a group, let them know, in advance, that you have a few lung issues. They’ll forgive you. Just keep having fun doing the best you can. Lou

[Lou Body IV]

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 and a bunch of other stuff for non-related issues. I’ve not had a follow up visit to the pulmonologist and am not due until Fall. My experience with ECGC is limited but, like most PF’ers, I grasp at straws. I’m 82 and am very active playing golf 4x a week and swimming almost daily. My resting oxygen levels are around 96. Shortness of breath has, to date, not been an issue. I can foresee it being an issue, however. That’s why I try to be so active as I think that, more than any medicine, is helping me.

Anyway, I’ve rambled but, bottom line, I do want as much information on ECGC as I can get. Any of you out there who can share will be appreciated. Thanks and Best Wishes, Lou