Dave
Forum Replies Created
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I am in a similar situation. 41 days ago, I was walking around, drove 2 hours round trip to take my mother to the doctor. The next day I had an acute exacerbation of my IPF. Prior I had oxygen but did not need it. By the time the ambulance got to my house my 02 sats were 37%. I was taken to the hospital. 28 days later I was transported 8 hours via ambulance to Florida. I have been waiting for a room at the larger hospital… total of 40 days in the hospital awaiting emergency lung transplant assessment. I was told my options were hospice or lung transplant. I said I want the transplant! It can’t get here fast enough as far as I am concerned. Transplant is a major operation and not without consequences, but I will deal with those. I have had enough of this IPF mess for 3.5 years. Ready to reclaim a better quality of life!
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Hi Joe! Thanks for sharing your journey and so sorry for your loss of your good friend.
I can’t speak to OFEV, but I have been on Esbriet for 1 year and 9 months and have never had any side effects. I always eat something before taking it (if only a graham cracker or something light), and to date have never had nausea. I wear light weight long sleeve pullover shirts and a hat and to date have not had any sun problems.
Everyone is different but wanted you to hear from someone who has not had the side effects that others may have struggled with.
Kindest Regards, Dave
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Charlene: I will certainly let you know if I see anything else from Pliant!
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Pliant Therapeutics (leaders of the original study along with the University of California) are continuing a trial with EGCG.
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@bakerbob
Thank you for posting your experience. I am curious who does comprehensive air quality tests and what results you recieved.
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Ron: These are incredible and encouraging results! Congratulations!!! Looking forward to hearing the report from your CT scan! Blessings!
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@lou4
Lou: Good to hear from you again! I started taking the EGCG Soon after the article came out about 5 months ago. I have not have any CT scans nor other tests since before then so I have no way to know if it is helping. Likewise, I have no way to know if taking Esbriet is helping me. In the aggregate, Esbriet is supposed to slow progression. Who knows if it is really working or not? I have not had any negative results from either Esbriet nor EGCG so I will continue with both. If I ever get any test results or CT scans I will certainly report results! Grace and Peace!
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Gregory, Don, Judy, Charles and all others on this EGCG/IPF journey: I do not expect that any of us will receive much encouragement from the established medical community because of liability issues and the scarcity of clinical studies regarding these supplements. We are, in a real sense, on our own for this part of the journey. Heck, no-one can even tell us individually if Esbriet or Ofev are actually working for us. We do the best we can and live our best life. We share with one another what seems or doesn’t seem to be working for us. We are on this curious and baffling journey together! We are all living on God’s time. I appreciate and value each of you, your experiences, and insights! To Infinity, and Beyond! Dave
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The study states a 600mg dose daily for 14 days. I read that as taken 1 time daily. Another study I read on the bioavailability of EGCG showed highest availability was achieved when taken without food (ie, first thing in the morning after fasting at night. I take 600mg of TEAVIGO each morning along with 325mg of Curcumin. I also take the Curcumin at night.
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Lou… welcome back! I have no news to report other than I am still taking 600 mg of EGCG daily (all at once on an empty stomach with water only. I wait 2 hours before any other meds or food.) No weight loss to date. No negative side effects.
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Rebecca…that is incredible! How much Curcumin does he take, and with or without food?
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Hi Rebecca! So sorry for the frustrating Dr. appointment. I was also eagerly awaiting your report on your husbands visit! I don’t go back for any significant tests until Mid October, so probably won’t have anything quantitative to report for awhile. The good thing about that is it will reflect 4+ months of taking EGCG. I will have a liver panel blood draw soon and if anything unusual (positive or negative) shows up I will report it. I am also looking at adding Curcumin to my approach having read the the two together enhance another.
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Hi Lou! Great to hear you are tolerating the EGCG so far. I too am taking Esbriet and I do that with food about 1-2 hours after taking the EGCG with no food. The issue of bioavailability is interesting to me. I feel somewhat like a blind man feeling my way through a maze of research and various information channels. After reading your post, I did contact the company I bought EGCG from and he referred me back to the article I had posted on this board indicating that food degrades the bioavailability of EGCG. The article indicated that taking the EGCG on an empty stomach with only water was 2.7 times more effective than taking it with food. I am not a doctor, nurse, nor scientist so I can only go by what I read. It would be interesting to see what the nurse thought after reading the article. Perhaps someone on this thread can print the article and take it to their Dr or nurse for comment/ interpretation. While there is a lot of interest in the effects of EGCG on many conditions, there is still so much that is not known. It seems that there is great benefit potential, but the current delivery methods are not optimal to get the full benefit of this and other natural supplements such as curcumin. It is frustrating to all of us to be so close to a seemingly good thing and not be able to maximize its usefulness! Still feeling my way along.
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Hi Rebecca! Your husband seems to have had great results with the Esbriet so far. I hope he and the rest of us see positive benefits from the EGCG as well!
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Hi Jerry and thanks! The articles I have read on weight loss and EGCG seem to indicate that some weight loss can occur but when combined with intake of higher levels of caffeine. I do drink one cup of coffee most days, but I think higher levels than that are used to facilitate weight loss and even then weight loss is not always an out come or significant. Will keep you posted and blessings to you on your journey!
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@jmsutt
Hi Janice! I bought Healthy Origins brand Teavigo (Caffeine Free) . It is available at both Swansonvitamins.com and Amazon.com. Hope this helps! Kindest Regards, Dave
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I have been taking 600 mg of Green Tea Extract for 1 week (Decaffeinated, 94% EGCG). I have not lost any weight. After 1 full week, the quantitative results are:
Oxygen Saturation increased from Average 94% to Average 96%.
Measured by home pulse oximeter.
The only thing that has changed in my routine is that I began taking the Green Tea Extract. I have not experienced any side effects or negative consequences. I have not had any other medical tests or measurements. Plan to have a breathing test in approx 4 months.
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Hi Charlene!
Always glad to share. I suspect I won’t have much to report as far as any results for a few months. I did not expect any immediate noticeable difference but hope to be able to see some quantifiable results via a breathing test, blood labs, and/ or CT scan in 3-4 months. Will continue to read and research in the meantime. Blessings!
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Bioavailability of EGCG:
Just received my order of EGCG and immediately took two capsules (150mg ea). Went and read some more research and discovered that optimum bioavailability of EGCG is achieved by taking it without food and only water. Bioavailability is important because it determines how much of the substance gets to the intended target/s. In other words, many things impact the results of ingesting a substance to include absorption, degradation of potentcy by air or light, etc. Maximum bioavailability is preferred. Taking EGCG with a meal reduces its bioavailability. I will incorporate this change starting tomorrow morning. Here is a link to the article for those that want to get into the details::
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Penny: Our situations are very similar… I ordered the same product as you and plan on the same dosage. I started Esbriet as well ( 9 weeks ago). I read about the rash side effect but have not had that. I have now read many scientific studies on EGCG for a variety of health applications and find it encouraging that there has been so much interest in it and in further studies. Time will tell! Hoping you and the rest of us have positive results going forward!
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Hi Rebecca! Praying for good results for your husband. I am hoping to see some results over time, but I realize this did not occur over night and results may take a while to begin to surface. Having said that, I am moving forward believing that in sticking with it I am doing something good and positive for my health that could get me through the time until there is a cure for IPF.
I do hold the hope that with all the advances in research around the world, a cure may be available in the next few years. Any positive results from this EGCG are a blessing. Given the many other positive health benefits I have been reading about EGCG, I will probably be taking it the rest of my life!
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1: The March 3, 2020 issue of US News and World Report picked up and highlighted the New England Journal of Medicine article we have been discussing in this thread: https://www.usnews.com/news/health-news/articles/2020-03-11/could-green-tea-extract-help-fight-pulmonary-fibrosis
2. Here is an article that warns against doses over 1000 mg. https://www.nutraingredients.com/Article/2018/04/19/EGCG-warning-EFSA-safety-assessment-suggests-green-tea-supplements-should-come-with-warning
3. There are EGCG products available that indicate they are Caffeine free.
4. As others have mentioned, the dose used in the cited study utilized 600mg per day. I feel comfortable with that. Since there is no cure for this disease at this time, the research articles on EGCG are the only thing I have seen that offers any present hope of inflammation reduction ( and less scarring) and possible positive impact. While I have started taking Esbriet, there is no real way to ever know if it is having a positive impact.
5. I discussed the NEJM article with my pulmonologist yesterday. While he could not state definitively that EGCG would help, he did say that if he had lung fibrosis, he would take it.
6. EGCG also has research support for risk reduction of getting and fighting various cancers. I have also been dealing with early stage non invasive bladder cancer. I don’t see any downside here in using EGCG in conjunction with best medical treatment practices.
7. I should receive my order Saturday and begin taking 600mg daily on Sunday. I hope that a year from now there will be some quantifiable positive difference in my condition to report, either visibly through HRCT results or experientially through breathing tests. My thoughts are that the taking of Esbriet can only show lack of progression ( which might not even be due to taking Esbriet) but the taking of EGCG could actually show some level of improvement. I am taking a proactive approach. I have nothing to lose by taking a responsible dose of EGCG and everything to gain. Trusting God in all things!
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I just started on Esbriet a month ago. I have not yet begun losing weight but I am interested to hear if anyone is taking green tea extract as a supplement and is having any noticeable results. Seems to good to be true!