April 22, 2020 at 4:06 pm #24104
This small study (link below) published in the NEJM sparked my interest until I learned that EGCG is recommended for weight loss. One of the IPF symptoms that I’m experiencing happens to be unexplained weight loss. I’d like to add EGCG to my regimen but the weight loss issue concerns me. If you have weight loss and have taken or take EGCG, has the weight loss continued, gotten worse, or reversed? If so, I’d like to hear from you.
April 23, 2020 at 2:11 pm #24118
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!
April 23, 2020 at 2:16 pm #24119Stephen GouldParticipant
I recently read this, and have an order on the way.
April 23, 2020 at 9:55 pm #24127
Really good questions about EGCG Jerry! I’ve never taken it so I unfortunately cannot comment on the weight loss concerns, but wonder if others have tried it and had any concerns with this side effect? The sample size in this study was indeed small, something to consider, but maybe something to speak with your physicians about since it was published in the NEJM, a credible source? I know my doctor’s are reluctant to read anything that isn’t a credible source but if anyone has had this discussion with their doctor, I’d love to hear how it goes. Let me know what you decide to do Jerry and I’ll monitor this thread to see if anyone has some good insights to share.
April 23, 2020 at 9:56 pm #24128
I’m curious to hear something as well Dave, @6whitehorses ! Hopefully someone has some information to share. Hope the side effects of Esbriet are doing okay with you so far.
January 7, 2021 at 8:30 pm #26803jim noxParticipant
Hello Charlene, Ron, and others inquiring about green tea extract. I began taking the Green Tea Extract in the approximate dosages used in the study published in the NEJM, since the study was first published in the Pulmonary Fibrosis News. Have used several different brands, but not the Teavigo brand used in the study. All brands had labeled content of EGCG.
After some 6 months of fairly rigorous adherence to the regimen described in the study, I did not notice any improvement. In fact, I experienced continued decline in all perameters (nearly continuous Sat rate measurements, ranch and house work capability, etc.,) except my regular 6 min walk tests, which have stayed in the same rather broad range between 340m and 380m. My PFTs show a slow decline in diffusion.
Bottom line, over a period of about 9 months, the first 6 of which I strictly adhered to the regimen, I have noticed no improvement and have experienced increasing disability and increasing need for O2 during any activity other than sitting still. My general conclusion is that, for my particular body and situation, the Green Tea Extract experiment was not productive or noticeably helpful and I have abandoned the regimen, except for occasional capsules of extract, and brewed green tea on occasional, non-rigorous basis. This is my anecdotal experience report. Wish it were a better outcome.
January 8, 2021 at 5:44 am #26804
I wish it were a better report too. It’s essential that we not think of green tea extract as a magic elixir to cure all IPF at this point. It appears to be a perfectly safe product with several proven benefits other than for IPF. So there little to lose and much to gain for those with IPF who experience benefits.
Researchers have yet to identify the causes of IPF. There may very well be more than one cause. They have found several common markers in blood and cell analysis of IPF patients which may someday lead the researchers to one or more causes.
It could very well be that green tea extract is effective for some causes while ineffective for others. Or, your case might represent a one-in-a-million anomaly in treatment data. Data, btw, to my knowledge is not being compiled nor is it likely to be compiled unless a non-pharmaceutical source steps up to fund necessary studies.
You might consider whether the extract is preventing your case from getter worse faster than it otherwise would. And then you should deal with some quality of life decisions. Decisions like when your condition deteriorates more do you want to live and struggle as long as possible or stop treatment and allow things to happen sooner? These are all complex decisions only you should make for yourself.
On the bright side, Fibrogen’s pamrevlumab drug has advanced to Phase 3 clinical trials. Its been proven to halt IPF disease progression and “ease fibrosis in IPF patients” in previous Phase 2 studies. Phase 3 will expand the number of people in the trials.
Details are here: https://tinyurl.com/ipftrial (goes to Pulmonary Fibrosis News article)
There is actually two phase 3 studies call ZEPHUS and ZEPHUS2. They are actively recruiting IPF patients ages 40-85 who have been treated with Esbriet (pirfenidone) or Ofev (nintedanib) but stopped using them.
PF patients are being recruited for the ZEPHUS trial in the United States, Australia, Argentina, Taiwan, Chile, and the Republic of Korea.
IPF Patients for ZEPHUS2 are being recruited in Georgia, Italy, Hungary, and Lebanon.
To view details of the trials and how to apply go here: https://clinicaltrials.gov/ct2/show/NCT03955146
January 8, 2021 at 8:10 am #26811
Thank you so much for taking the time to share this with us and write such a thorough update. I really appreciate it, and I know others will also. Though, like Ron, I wish it were better news overall. Have you heard about the green tea extra studies taking place in Texas now too? It’s interesting that it continues to be investigated, but I suppose the more things being looked at to help this terrible disease, the better. Thanks again for sharing your experience with us and wishing you the very best.
March 24, 2021 at 7:07 pm #27861Manzurul KhanParticipant
I started taking EGCG (350 mg capsules) right after I was diagnosed in late October. I also drink green teat each day. I read the same research report and felt I could not lose anything by taking the extract. I also changed my diet completely with anti-inflammation items replacing anything that causes inflammation. I have not lost weight in 5 months but feel better. My condition is also stable to trending in the right direction. My most recent breathing test and 6-minute walk test also gave better results than in November. I take lot of herbs – ginger, cinnamon and turmeric. I don’t know exactly what might be helping me. I also exercise each day pushing my lung capacity as much as I can. I want to stay away from Esbriet or Ofev as long as I can. My doctor thinks I should start the med now to avoid an acute condition in 1-2 years.
April 23, 2020 at 9:57 pm #24129
April 29, 2020 at 6:37 am #24173
This is potentially good news as green tea has been touted a long time as high antioxidant possibly better than Vit C and E among several other benefits. Makes me wonder if Wei products have EGCG in it…
April 30, 2020 at 10:18 am #24185joe hickParticipant
Started taking it yesterday. 1000 mg to start, than, 2000 mg. We will see.
April 30, 2020 at 10:31 am #24186Barry McGeeParticipant
How did you arrive at those large doses? What brand did you buy?
April 30, 2020 at 10:49 am #24187
Joe, have you been taking EGCG and, if so, what has your experience been: weight gain or weight loss?
April 30, 2020 at 11:09 am #24188Sarv PunjParticipant
Friends I have read the news about EGCG found to be useful in treatment of IPF. While green tea is easily available, do we have to buy EGCG (the green tea extract) specially or it is automatically delivered to the body by taking green tea regularly. Kindly educate me on this. Thanks.
April 30, 2020 at 11:22 am #24190
I ordered the green tea extract from the brand the report used in the study, and my husband started it this past Monday. I will let you know how he is doing. My husband sees his pulmonologist later in May
April 30, 2020 at 11:35 am #24189
This is what the report stated:
“Half were given oral capsules of EGCG (from Teavigo) at a daily dose of 600 mg for 14 days before the biopsy, while the other half were not (untreated group). Tissue from five healthy lungs were analyzed as controls.”
April 30, 2020 at 3:07 pm #24194Gregory DixonParticipant
I find it extraordinary that the NEJM would publish this long letter about a short study of a supplement drug. I suppose the results, after a mere 14 days of treatment, were so extraordinary, that they wanted to get the word out. I ordered some easily on Amazon and started taking it last week.
April 30, 2020 at 8:20 pm #24199
@joehick0529, @sarvpunj, @jgenesio: Hey Joe – I read doses over 800 mg per day may cause liver damage but under 800 mg no damage has been noted. However, there is not an established safe dosage. Since we have this lovely disease I will start when I can get an order here in the Philippines but at about 400 mg per day and increase to 600 mg and/or a cup of strong green tea.
Green tea has between 50 mg and 100 mg od EGCG per cup. That probably depends on the type of tea, how old it is, and how long you steep it. I have some of that on hand and will start today using a triple dose.
In the past when I drank green tea daily I never noticed any weight loss and I prefer a strong brew.
Stay well… Steve
March 22, 2021 at 12:59 pm #27830Nigel WrightParticipant
Green Tea extract is interesting and 600mg per day looks ok but it states on the jar take with food but other posts say better absorbed on an empty stomach ?
Question is it safe to take 600mg at the same time or should you divide it morning and night and if taken in one go should it be on an empty stomach
April 30, 2020 at 8:22 pm #24200
May 1, 2020 at 9:21 am #24203smileyParticipant
Trying to find the exact teavigo product the study used: “Half were given oral capsules of EGCG (from Teavigo) at a daily dose of 600 mg …
Anyone, please help? In searching, it appears that Teavigo is a manufacturer and a trademark and other companies use their product, but i may have missed something.
Anyways, the form used was 94 percent EGCG, apparently and the differing products on the market say different things about this percentage and vary widely in price. In short, looking for the same product the study used or a product that matches it its efficacy.
Anyone experience in Green tea extract trusted sources?
May 1, 2020 at 12:38 pm #24205joe hickParticipant
I bought Nusapure off of Amazon. The recommended dosage from them is 2 capsules per day, and they are 1000mg. I am going to stay with the one capsule per day. I just started this a few days ago, so nothing to report as of yet, by the way they are made in the USA.
What I am impressed with is that this study was reported in the, New England Journal of Medicine.
May 1, 2020 at 4:39 pm #24206Maynard James KellerParticipant
Life Extension has a tea product high in EGCG, which they describe as follows:
Mega Green Tea Extract
Green tea (Camellia sinensis) contains health-promoting polyphenol compounds such as epigallocatechin-3-gallate (EGCG), a powerful anti-aging phytonutrient that has been the subject of extensive scientific research. Our Mega Green Tea Extract provides more of these potent compounds than the equivalent of several cups of green tea in a lightly caffeinated supplement.
Each capsule of Mega Green Tea Extract provides 725 mg of green tea extract, standardized to 98 percent polyphenols.
* * *
I’ve been taking the product for years, but not in this amount. I’m increasing the amount now.
I I’ve been using Life Extension products for years in regard them as an ethical company. They also sponsor quite a bit of research.
- This reply was modified 2 years, 3 months ago by Maynard James Keller. Reason: Formatting issues
May 1, 2020 at 7:54 pm #24208Penny RyleeParticipant
I just got the OK from my pulmonologist to take 600 mg of EGCG a day. He says it sounds interesting. I had sent him the article from our newsletter.
I might do a clinical trial at Stanford Medical School for EGCG that is the same product once the virus has calmed down.
This sounds exciting!
May 1, 2020 at 8:24 pm #24209
Let us know how it goes for you, Joe! Goodluck.
May 1, 2020 at 8:34 pm #24210
Hi @prylee ,
Thanks so much for sharing this news with us – interesting that your doctor was in support of this, that does sound like good news. I’m glad you shared the news letter with him and he was in support 🙂
Let us know what you decide on the clinical trial.
Best of luck!
May 1, 2020 at 11:10 pm #24216
Penny – Thank you so much! Your response is very helpful. I’ve ordered a 4 month trial supply of 500 mg capsules and will take one-a-day. Please, let’s continue to exchange information and results. My biggest concern is weight loss. I’m already experiencing a slight, unexplained weight loss probably attributable to the IPF. I’m down from 198 to 188 over this past year and don’t want to lose any more if I can help it.
Thanks again! Jerry
- This reply was modified 2 years, 3 months ago by Jerry Genesio.
May 1, 2020 at 11:27 pm #24218Sarv PunjParticipant
Hello Everybody everybody on the Forum. Various posts on EGGC are very enlightening. I am still not sure which brand of Green Tea Extract I should buy for my wife. There are numerous brands available in India, local as well imported. Also what potency capsules are adequate. I will be grateful if more light is thrown in this regard.
May 2, 2020 at 11:55 am #24221Linda KleinParticipant
I too are very interested in others results after using the green tea extract. I’m will see what I can find in EGSG extract available to buy.
May 2, 2020 at 12:17 pm #24222
Sorry I can’t be of more help with this, I had another member contact me about the brand of EGCG extract as well and I couldn’t really find anything consistent. I’d maybe try messaging those on the forums directly who have posted that they have purchased the product and see where they got it and their thoughts on it so far? This is of course very subjective, but I’m not seeing a specific recommendation listed in any of the literature. If you find one, let us know.
May 3, 2020 at 12:25 pm #24228Kay KagyParticipant
Hi, I started the green Tea with EGCG yesterday after a great discussion with the pharmacist from the Ofev site. I have been on Ofev for 2 years now. So-she was so thorough in her response. First-no drug interactions with Ofev, next-she had the article and the study and said it was important if I was going to do it to match the amount of EGCG in my tea capsules as was in the study. I had purchased 500mg caps that showed 98% green tea BUT only half the dose needed per cap so she said I needed 2 a day. On re-reading the printout it does not say the daily needed substance for this study but she knew it! She also said to be sure the drug was certified by the government to be as indicated on label as many vitamins and supplements were not. Mine was GMO certified. I will keep you posted on how things go. Thanks, Kay
May 3, 2020 at 2:20 pm #24229
That is great to hear, thanks so much for sharing… I’m glad your experience was positive with the Ofev Pharmacist was positive too. For those interested, might you be willing to share the link to the product you got and where you purchased it? I know some folks are looking for information on this. Please do keep us posted on how things go Kay, that would be great.
May 3, 2020 at 3:32 pm #24235Rene HakkenbergParticipant
I got in touch with Teavigo which was mentioned in the test results and they referred me Master Supplements, tel 800 926 2961.
I ordered 3 bottles of 62 capsules for $85.66 and if I am not mistaken they were 150 mg, which would mean 4 caps per day if we want to stick to the 600 mg as used in the test. I am not sure when I will receive them as there are no flights to Bonaire due to the virus. On amazon you can get cheaper ones and higher doses per cap, but not knowing much i stuck to the ones used in the test results.
As you mentioned, all of us using it should report in this forum to compare results. Also I hope we can get more expert guidance as to dosage and length of time to take it. Let’s be as detailed as possible in our reporting. Not just “I am feeling better” but details. Let’s hope it works, it would be a wonder(ful) pill.
- This reply was modified 2 years, 3 months ago by Charlene Marshall. Reason: formatting to remove code
May 3, 2020 at 5:29 pm #24236
I ordered it from Healthy Origins on Amazon. I read the replies and one individual participated and here is his reply:
‘Amazon Ember’, I participated in a study group for 2 weeks taking four capsules of this green tea. The study was being done by a noted University and I was chosen because I have early stage IPF. (Pulmonary fibrosis). The University chose this tea because of its purity as it was all lab tested and certified for the study. I gave a blood sample at the end of the test to allow for examination. Green tea has been used with mice and produced markers that indicate a reduction of scarring and, potentially, scar reducing action. I have no idea what the study will show but I am now buying two bottles of this product from Amazon every month and taking it in am 1 hour before breakfast. I guess you would say I am assuming this has benefit for my condition and continuing with my own study. Besides, green tea has many other benefits for people with normal health– so why not take it? I hope this helps someone.
- This reply was modified 2 years, 3 months ago by Charlene Marshall. Reason: formatting to remove code
May 5, 2020 at 2:00 pm #24257jaime L manriquezParticipant
hello falks, I m on a green tea for a week already, got it from superstore, 2 little boxes of 20 bags each, inexpensive though, about US$ 2,00 two dollars per box. Will take em all 40 and will comment, best reagrads for all of you friends, hopping something good come out for all of us from researchers on this COVID-19
May 5, 2020 at 3:32 pm #24259Michael PennerParticipant
I prematurely submitted a post letting all know of my intention to start taking 300 mg/day of Teavigo. Unfortunately, I was just informed/reminded by Cardiology of yet another underlying cardiac condition. Green tea extract has a significant amount of caffeine and I’m now advised to not consider any high doses; cups of tea yes but, extract-no. Forgot how “compromised” my heart has become over the years. Sorry for the mixed messaging. I am on 24/7 home oxygen and have self quarantined since January. For those who are “heart-healthy”, go for it! Anxious to hear of some positive results.
May 5, 2020 at 5:36 pm #24260JillTParticipant
Glad you clarified, Michael. I’ve recently been diagnosed with a few cardiac complications stemming from my IPF, so I definitely won’t be trying this supplement! Pulmonary hypertension is a quite common comorbidity of IPF and high caffeine could be quite dangerous, I would think.
May 5, 2020 at 6:09 pm #24261
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!
May 5, 2020 at 6:15 pm #24268
Thank you so much for sharing this Rebecca, I am sure many will find it helpful – including the review you included! Sounds like many are inquiring about purchasing this product, so thanks again for taking the time to write and share this with us. Keep us posted on how you’re feeling with this new product if you can!
May 5, 2020 at 7:18 pm #24269
Dave, I totally agree that we need to take a proactive approach. Being that Green Tea Extract has been shown to fight certain cancers, and we hear all the time how we should be drinking green tea, how can it not be a good thing?!
My husband’s appointment is on the 18th of this month and he just started taking the extract a week ago so I am not sure if that is enough time but whether it is or isn’t, I feel good about this.
I will let you all know if there is any indication this is working.
May 5, 2020 at 8:12 pm #24270
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!
May 5, 2020 at 10:56 pm #24271
Michael: Thanks for mentioning your cardiologist’s concern about the caffeine. I also have a cardiac condition and am in A-Fib most of the time so your comment has prompted me to discuss the EGCG with my cardiologist before I start taking it. The one I’ve ordered is Nature’s Wellness Green Tea Extract 500 mg which has 5% natural caffeine.
I am so very impressed by all of the responses my original post received concerning EGCG and the very brief NEJM article. There is so much information coming in that I’m confident EGCG is something worth pursuing. And there are many who are starting it with a commitment to keep us all informed of progress. Thank you!
May 6, 2020 at 7:43 am #24272Tom NicholasParticipant
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 getting about 450mg of EGCG. Is this a correct assumption?
May 7, 2020 at 1:25 pm #24282
May 7, 2020 at 3:28 pm #24285
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
May 7, 2020 at 5:44 pm #24289Penny RyleeParticipant
I believe the two-week study at UC Davis (in conjunction with UCSF) used the Teavigo Green Tea Extract from Healthy Origins. I got it through the internet and am taking four 150 mg daily as they did in the study.
I am doing a walk test and spirometry next week at the pulmonary lab and am excited to see if my lung function has improved.
I stated Esbriet six weeks ago and now have a horrible sun rash on hands, neck and lower legs. I have heard that this side effect might end within six months. I sure hope so. It’s had to climb hills (with the gym closed) with this creepy rash.
Good luck with the EGCG!
May 7, 2020 at 5:48 pm #24290
My husband also came down with a horrible sun rash on the back of his neck 5 years ago. He is very cautious of putting sunscreen on now when outside. He has not had a problem since so hopefully you won’t either.
May 7, 2020 at 8:54 pm #24293
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!
May 8, 2020 at 3:23 pm #24294
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::
May 10, 2020 at 10:05 am #24299
Thanks so much for sharing this with us and good reminder re: bioavailability. For those of us on the anti-fibrotics and wanting to take the EGCG, we’ll have to figure out a schedule as to when to take it without food to maximize bioavailability. I know it is important to take our anti-fibrotics with food, so it’ll take some planning for the EGCG but certainly manageable. Thanks for the reminder, and for sharing the credible resource of the NCBI article. Let us know how you manage with your first few doses…
May 10, 2020 at 10:27 am #24301
Thanks for sharing all of this information with us Dave! Of particular interest is the comment your pulmonologist made about EGCG and if he had fibrosis, he’d take it. Glad to hear this, and that your order came. Let us know how you make out today (Sunday) if you can, or after a few days of taking it. Will be curious to hear…. thanks for taking the time to provide us with credible links as well.
May 10, 2020 at 10:41 am #24303
Thanks for sharing the contact number with us, Rene! I just replied to your email, but am looking at possibly ordering the extract as well, to give it a try. I can’t see how it would be harmful to us, even if not beneficial, and I like the comments from others on here that their physicians are in support of trying it, or that they’d explore using it if they had lung fibrosis. We’ll see – I’ve been in touch with my pulmonologist and GP almost daily last week, so when he calls this week I am going to explore it with him.
I also think it is a good idea that those on it compile their findings, citing detailed improvements or things they notice after being on the extract. Details are key! Unfortunately, I don’t have the capacity to track this using an excel sheet at this time, but I wonder if someone did? Something worth exploring if someone has the time to compile all the information, please let me know.
May 10, 2020 at 10:49 am #24305
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!
May 10, 2020 at 10:55 am #24309
Sounds great Dave, I look forward to hearing! I also hope you have some quantifiable results in the coming months, wouldn’t that be great? Thanks again for sharing and wishing you the very best. Have a restful Sunday 🙂
May 12, 2020 at 3:50 pm #24328
Received word back from my pulmonologist today saying she thought the EGCG article in the NEJM, though brief and involving a small number of patients, shows promise. She said she could think of no reason why I shouldn’t start taking EGCG. I’m starting today and will watch and listen very carefully to how my body responds. If I notice any changes, I’ll post them here.
Best to all!
May 13, 2020 at 2:09 pm #24333Cornelia HendershotParticipant
I’ve been drinking green tea for years & have not lost weight nor has my IPF improved. But it can’t hurt. Taking megadoses of anything can have unwanted side effects.
May 13, 2020 at 9:13 pm #24341
That is so encouraging, thank you for circling back with your doctor’s thoughts on the NEJM article on EGCG. Although no formal medical training of course, I also couldn’t imagine it causing us harm in trying it so I’m glad you’re giving it a try and will pay close attention to your body and any changes you notice. Please do let us know and I look forward to hearing. Best of luck and thanks again for sharing!
May 13, 2020 at 9:17 pm #24342
Thanks so much for writing and welcome again to the PF forums! I am also a green tea lover 🙂 Something to note, the EGCG Green Tea Extract as cited in this article: https://pulmonaryfibrosisnews.com/2020/04/21/green-tea-extract-stops-anti-fibrotic-processes-ipf-small-study-finds
… is quite different than regular green tea, a lot more concentrated and targeted from what I understand. Hopefully the side effects are minimum, stay tuned here for folks who are willing to try it and report back on how they’re managing with the recommended EGCG doses of the extract, if interested.
May 14, 2020 at 6:29 pm #24357DennyParticipant
I can’t believe the heading is worded wrong and they didn’t catch it! It says the tea extract stops ANTI fibrotic process. Shouldn’t it be PRO or leave the word ANTI out?
May 14, 2020 at 8:30 pm #24364
Hi @deliassen ,
Thanks for bringing this to our attention! I would imagine you’re right, and I’ll connect with our editor-in-chief to see if it needs to be updated to reflect a title with the ‘anti’ removed. It may have just been a typo on our end publishing the article, these things happen but I am really grateful you brought it up. Thanks again!
UPDATE: fixed Denny, thank you for pointing it out!
- This reply was modified 2 years, 3 months ago by Charlene Marshall.
May 15, 2020 at 9:33 am #24369Edward BrownsteinParticipant
Hi. I have been taking 750 mg of green tea extract for about 3 weeks. I have not had any weight loss. the only difference I have experienced is my oxygen saturation has in increased from 96 to anywhere from 97 to 99. I have no idea if this is result from the extract.
May 15, 2020 at 9:52 am #24370
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.
May 15, 2020 at 11:19 am #24372janice suttonParticipant
Hi Dave, would you please share what brand and where you purchased (600 mg, 94% EGCG) you green tea extract. I would like to try it but I also want the exact formulation which you have found and is used in the article.
Thank you, Janice
May 15, 2020 at 12:39 pm #24375
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
May 15, 2020 at 2:30 pm #24377
That’s good news Ed Brownstein! My only concern has been weight loss. I started on 500 mg EGCG QD about a week ago and hope I can keep or increase mt weight. Thanks for posting your results.
May 15, 2020 at 2:36 pm #24378
Dave – I hope your weight remains steady. Weight loss is my greatest concern. I, too, have been on EGCG for about a week with no weight loss so far and no other adverse reactions either. Thanks for posting your progress. I’ll be interested in what you have to report a month from now..
May 15, 2020 at 5:11 pm #24380
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!
May 16, 2020 at 11:03 am #24391
Thanks so much for sharing Dave! I’m glad you haven’t had any adverse/difficult side effects, and that your saturation seems slightly improved, that is great. Keeping my fingers crossed that more quantitative data emerges from others using the extract as well. Thanks for sharing!
May 16, 2020 at 11:04 am #24392
May 17, 2020 at 10:31 am #24406Rene HakkenbergParticipant
In order to be able to draw the most meaningful conclusions of taking EGCG, I would suggest to all of us using EGCG and that are reporting results thereof in this forum to add as many details as possible, such as what lung disease you have, since when, taking Esbriet, Ofev or neither, whether or not you experienced weight loss and length of time taking the extract. With these details we will be better informed to draw meaningful conclusions. For instance, it could be that EGCG works for one disease but not for another. Thank you and let’s hope it works for all of us.
May 17, 2020 at 12:36 pm #24409
My husband was diagnosed with IPF in 2014. He has been on Esbriet since January 2015. He started the EGCG 2 weeks ago and not for the weight loss, though that would be nice, but for the same results as the study was showing. He has an appointment with his pulmonologist this week and I will report back either way if their are changes whether good or bad.
May 17, 2020 at 3:09 pm #24411
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!
May 17, 2020 at 3:46 pm #24412
He has had great results considering the fact that shortly before he was diagnosed, he couldn’t even walk a few feet without panting and needing to sit down. Obviously he is still battling this horrible disease but from October 2014 to now? I consider a huge victory for him as well as his Pulmonologist said my husband is the Pulmonolgist’s poster child as well as the Pulmonologist’s associates. The green tea extract is just another step for making my husband’s life a little easier. It can not hurt him but only with God’s Will, help him as well as all of those suffering from this disease if the extract can help. Unless someone can prove that it will hurt those suffering from this disease, I will make sure he stays on it.
May 17, 2020 at 7:50 pm #24410Edward BrownsteinParticipant
I haven’t heard of any adverse effects from those of us who have been taking the extract.Not sure if its the real deal, I do know I’m 85 with ipf and taking Ofev since December and my oxygen saturation has increased 2 to 3 percent. I can’t see any downside by trying it.
Wishing everyone well
May 20, 2020 at 8:49 am #24450
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.
May 20, 2020 at 2:41 pm #24451
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.
May 20, 2020 at 2:53 pm #24452
My husband has been on the EGCG for about a month now. He had an appointment set up to see his Pulmonologist this past Monday, the 18th. Unfortunately, it was a teleconference appointment in which we had no clue that this was the way he would see his Pulmonologist. To me it was totally worthless since there was no vitals taken, no Pulmonary function test taken so what was the point? The Pulmonologist saw his blood work my husband had done on May 1st. Asking him over the phone how he feels is not reliable to me. I’m a little frustrated and now we are leaving out of the state till October so will not be seeing the doctor until November where he will take a Pulmonary Function test. I can not tell you anything in regards to my husband taking the Green Tea Extract other then he feels good and it does not bother him with sleeping or notice any weight loss. I wish I could tell you more. I’m hoping those on this post who are taking it will have more information.
May 20, 2020 at 3:08 pm #24454
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.
May 20, 2020 at 3:20 pm #24456
Dave, I will say this about my husband and what he takes. He has been on Curcumin since spring of 2015. He had a C-Reactive Protein test done on May 1st and his inflammation in his body has reduced to a normal level. I tribute that to the Curcumin and I believe that is a plus when having inflammation in the lungs. My opinion only but my husband is not getting worse and it has been 6 years now. I totally believe in Curcumin!
January 7, 2021 at 7:34 pm #26800
I have read a number of times that taking curcumin with fresh ground black pepper and a little oil like good olive oil can increase the bioavailability up to 2000%. That’s a dramatic increase. Hope this helps your husband.
May 20, 2020 at 4:57 pm #24457
May 23, 2020 at 9:40 am #24477
Thank you for sharing with us what you can Rebecca, it is greatly appreciated! I can imagine your frustration with the teleconference meeting vs. an in-person one, I’m so sorry that was your experience. Is there any opportunity to ask that he be on a cancellation/call-back list to potentially get an appointment before October? Fingers crossed his PFTs are still positive. Thanks for writing to us.
May 23, 2020 at 9:43 am #24478
This is a really good suggestion @renehakkenberg and a great way to compile some quantitative and qualitative data, I just may need to put my head together about how to do this. I may be able to create a shared spreadsheet for those who are taking EGCG and want to compile their results, so we can track it all in one spot. I’ll have to give this some thought, as I don’t know if I have the capacity to monitor it but I’d be happy to create it. Let me seek some clarification from our Forums Director and get back to you! Keep on me about this though so I remember ok? I am juggling lots right now! 🙂
July 14, 2020 at 11:14 am #24958Luke R MatthewsParticipant
thank you for your post on bioavailability of EGCG. Could you tell me whether you Talked to Healthy Origins or Teavigo concerning taking EGCG without food? I also take Healthy Origins with 150 mg of Teavigo. The directions state to take with a meal. I have already switched to taking it without meals but would be interested in the link to the article you mentioned. Also do you take two Capsules twice a day or four capsules all at once? I have been taking mine 2x per day.
Thank you. Luke
July 14, 2020 at 11:16 am #24959Luke R MatthewsParticipant
I found your link to the article Dave. Thank you.
July 14, 2020 at 3:21 pm #24969
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,
July 14, 2020 at 3:29 pm #24970
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.
July 15, 2020 at 7:51 pm #24983
Thank you so much for writing and letting us know how you’re doing. Nice to hear from you!
BioNews Insights (our research team) is almost done finalizing the survey to compile some data assimilation and we’ve had a conversation with the lead investigator of the original EGCG study as well (he is out of UCSF). He gave us some good direction for this project, and appreciate everyone willing to participate. Right now, we’re looking to gather a control group so we can begin 🙂
Thanks again for connecting and checking in on the status of the EGCG conversation. Hope you’re doing better!
July 16, 2020 at 11:26 am #24988Mona KleinParticipant
Question can you take ecgc when you are take Ofev?
July 16, 2020 at 2:19 pm #24989Rand O’BrienParticipant
I’ve been taking the Amazon capsules, forgot which one, at present Zenwise for about 6 wks. Thecapsules look the same as the ealier bottle with the same emount of ECGC. Bottle recommendation is 2/day, I take 2 twice/day. About 2-3 wks. into them I had my first 97% on the Oximeter, usually running at about 95, sometimes down to 92. Consistently O2 is now 96, 4-5 times per week 97 and once per week 98%. Really haven’t changed my routine beyond that. I have my pulmonary test next week, so we’ll see how my official numbers change from 11/19. Who knows, but something has shifted slightly.
July 19, 2020 at 9:15 am #24999
This is great to hear, thanks so much for sharing. How did your PFT go, or are they coming up next week? Would love to hear 🙂
Happy to hear about the seemingly improved 02 saturations. Would you be willing to participate in our EGCG project as an experimental participant, to report these findings? Basically we’re looking at conducting a longitudinal survey to track the effect of EGCG on patients using experimental and control groups. We’re just looking to recruit for the control group and then we can launch the survey. We developed it with advice from the lead investigator on the EGCG New England Journal of Medicine study at UCSF. Please let me know, but of course no pressure! I’m just happy to read this update from you.
July 19, 2020 at 9:45 am #25003
Thanks so much for writing — good question. I don’t believe EGCG is harmful to those taking anti-fibrotics, simply based on others’ reporting their doctors are okay with it and I know some forum members have been on both EGCG and Ofev. However, it is important to note that I am not a physician so I can’t ultimately give advice on this. Would it be possible to ask your doctor about this, so you feel comfortable with his/her answer and how to proceed?
October 5, 2020 at 9:00 am #25722Patricia WilliamsParticipant
Has anyone had a good result from their dr after taking the EGCG for several months. I called the Teavigo company and a young man there recommended Healthy Origins teavigo. I am taking that, so we will see.
October 6, 2020 at 11:26 am #25728StuParticipant
Does anyone know if Teavigo was taken once or twice a day in the study. They mention the dosage of 600mg of EGCG per day but they don’t really go into how it was administered.
October 6, 2020 at 12:29 pm #25730
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.
October 6, 2020 at 1:55 pm #25731Gregory DixonParticipant
Dave, thanks for your post. I’m doing much the same as you regarding the EGCg. I take 4 capsules of Teavigo by Healthy Origins each morning on an empty stomach. Though the study in the NEJM was conducted over a 14 day period, I have continued this dosage over a 5 month period. Have discussed this with my internist and two pulmonologist eliciting only shrugs. None had read the study nor did they seem interested.
October 6, 2020 at 2:51 pm #25733Don GraybillParticipant
I’ve been taking caffeine free EGCG Green Tea Extract (300 mg with breakfast and dinner daily) for about five months to combat IPF. I have no evidence that it has helped or not helped my IPF, but I have had no weight loss during this time.
October 6, 2020 at 3:00 pm #25734
I’ve been taking 600 mg of EGCG Teavigo by Healthy Origins for about 5 months, each night before bedtime. I make sure to not eat anything after dinner so that I have an empty stomach when I take it. (I take thyroid and another supplement on my early morning empty stomach and didn’t want to mix them.) I saw my pulmonologist last week and my breathing numbers had improved somewhat and CT scan showed no progression in last 6 months. I’m not taking Ofev or Esbriet and doc says that my IPF seems to be a mild case. He also said that the ECGC and NAC that I’m taking “might” be helping. I just made an appointment to go to the ILD center at UCLA for another opinion.
October 6, 2020 at 3:06 pm #25735CharlesParticipant
My wife has been taking Esbriet for 3 1/2 years. She begin taking 600 mg daily of Teavigo by Healthy Origins 4 months ago. She had a liver test last week and there were no issues. As always stated, this is not medical advice, just information about one individual.
I appreciate reading information on this site and pass what is relevant to her along to my wife. Thanks to everyone who posts and shares their experiences. It is very helpful.
October 6, 2020 at 7:25 pm #25739
Thanks for writing – good question, and thanks to everyone who provided some insight here in terms of the study. When BioNews Insights (our research division) was looking at launching a longitudinal questionnaire on patients with PF who are taking EGCG, I corresponded with Dr. Hall who was one of the principal investigators of the NEJM study. In one of our correspondences, he wrote to me verbatim: “Encourage anyone taking EGCG to use a single morning dose of 600 as opposed to multiple smaller doses over a 24 hr period”.
Hope this helps?
October 6, 2020 at 7:32 pm #25744
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
October 6, 2020 at 7:33 pm #25745
We hope to release some data re: the experiences of IPF/PF patients taking EGCG from the longitudinal questionnaire we’ve developed. I don’t know when the information will be released, but hopefully it provides some insight into their experience. I don’t have personal experience to share, but I would also be curious if others do after seeing their doctors.
October 6, 2020 at 7:49 pm #25746
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.
October 6, 2020 at 9:27 pm #25748
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!
- This reply was modified 1 year, 10 months ago by Charlene Marshall. Reason: tagging
October 9, 2020 at 1:18 am #25775
I began the extract in late April 2020. I started with two 150Mg capsules of Teavigo twice a day (2 morn, 2 eve) for a total of 600Mg a day.
Over a period of a month I was able go from 3 lpm O2 24/7 to no O2 (4 months later I added 1.5 lpm O2 at night to my CPAP line as an an experiment and found I awoke more clear headed. This improvement was quite subtle and may not have been noticed if I had not been looking for it.)
In the fifth month I got caught up on posts here and changed to taking the capsules on a empty stomach. I also reduced my total daily dose to 300mg. (150mg morn and eve). During the five months my health improved a lot. I was breathing easily, my pulse ox was consistently reading in the 95-100% range, I could climb the stairs to the second floor effortlessly without SOB.
I had a Medicare prescribed health exam by my PCP on Monday of this week and a office visit to my pulmonologist on Wednesday. This is my 6th month with Teavigo. Both commented that the crackles seem softer in their stethoscopes. I had a PFT and the technician said there was considerable improvement in lung function over the test in early March.
The pulmonologist is ordering a CTscan. I can’t wait to get the result from the scan.
October 9, 2020 at 7:25 am #25776
Ron: These are incredible and encouraging results! Congratulations!!! Looking forward to hearing the report from your CT scan! Blessings!
October 9, 2020 at 7:56 am #25777
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.
October 12, 2020 at 9:29 am #25785
Thank you for sharing your results with EGCG, that is great news to hear! I hope you continue to see improvement, and I know many will appreciate your post as we’re all looking for some tangible metrics to measure any type of improvement before and after the use of EGCG. Stay safe, and thanks for writing.
October 12, 2020 at 4:04 pm #25790Joy HoffmannParticipant
I have been taking 2 green tea extracts for about 3 months. Not sure if it helps or not.
October 13, 2020 at 5:23 pm #25805
My father, Waldir Tito, started taking in 07/10/2020 the EGCG of 200mg per day.
October 13, 2020 at 6:35 pm #25806
I have been taking 600 mg of ECGC for 6 months. Just had a CT scan and breathing tests; my CT scan showed no progression in the last 6 months and my breathing was slightly improved. But how can we know if it was the ECGC that caused the improvement? What would have been the result if I hadn’t been taking it? For that matter, how can anyone taking any of the other meds know what would have been the outcome if they hadn’t been taking it? We’re all in some giant experiment.
- This reply was modified 1 year, 10 months ago by Judy Fraser.
October 14, 2020 at 11:49 am #25819
My Father is taking since 07/10/2020 Green Tea Extract 500mg – Capsule with 60% catechins and 40% EGCG Epigallocatechin Gallate.
I know it’s a few days to evaluate, but my father is already more disposed to perform the physiotherapy, he’s eating again and sleeping better. He is happier and getting less tired. We are noticing an improvement in my Father’s health. Thank God!
We purchased the Green Tea at: https://www.innovaformula.com.br/online-store/Cha-Verde-Extrato-Seco-500mg-C%C3%A1psula-p85189067
October 18, 2020 at 3:28 pm #25846
That is great news about your Dad, I’m so glad he’s starting to feel a bit better. Sleeping and eating well are so important for managing this disease! I’d be curious to hear more about how your Dad is going on the green tea extract after he’s been on it a little longer. Please feel free to keep us updated and best wishes to you and your Dad!
October 19, 2020 at 9:49 am #25854
Todos os dias meu pai tem uma melhor resistência física. Ele voltou a comer carne e feijão. Nossa família e amigos estão felizes com sua boa evolução após o início do EGCG.
- This reply was modified 1 year, 10 months ago by JOSE AUGUSTO DA SILVA TITO.
October 20, 2020 at 7:32 pm #25869
October 22, 2020 at 3:35 pm #25892Randy MauzyParticipant
I began taking “Pure Encapsulations” brand of Teavigo Green Tea Supp (EGCG) , no caffeine, at a rate of 900 mg per day 5 months ago. The best I can determine that is the average safe limit from several respected studies. So far my liver and kidney enzymes show no change so I feel comfortable with that dose, no side effects or weight loss. I take EGCG only on an empty stomach (5 hours without food).
Historically, I took Esbriet for the first year then was switched to Ofev about a year ago. My PFT’s steadily declined although less so on Ofev. I had a PFT about the time I started EGCG and one a week ago (4 month interval). The tests showed NO decline between the two, for the first time ever. Performed slightly better on the six minute walk test (extra 20 meters).
From an O2 standpoint, I can maintain 98 % saturation with 2 lpm versus 3.5 lpm (at rest) before starting the EGCG. Less improvement on O2 with activity.
Will be interested to see how the next PFT turns out, but so far I am encouraged.
October 26, 2020 at 10:50 am #25912
Thank you so much for sharing your experience with EGCG! I know many patients are curious to learn more about this, and I look forward to the results of the longitudinal questionnaire PF News is doing to capture the experience of several patients taking this supplement. I’ll be sure to share the results when I can. I’m glad you’re encouraged thus far, and if you think about it, please circle back and let us know the result(s) of your next PFTs. Goodluck and thanks for writing!
October 27, 2020 at 1:17 am #25916
How do I get in on the survey you mentioned several times.? My results with Teavigo have been very encouraging.
On another subject: Thanks for responding to all those who have shared their stories. I know we all would like to thank them, but it’s best if one thanks on behalf of all of us than to choke the forum with numerous thank you messages. You seem to be right there first up which is nice.
I continue to do very well with my breathing. My last visit to the pulmonologist was rather brief. He clearly was running way behind as my 2:15 pm appointment didn’t start until 4:20 and I sort of got the bum’s rush as he worked to get through his afternoon patients. He didn’t even review my PFT with me but fortunately, the tech previously told me what I needed to know. My results were significantly better than last time. I didn’t get the six-minute hike through the office either. (I handled that by having my grandson walk me through the neighborhood for about 20 minutes. Only stopped briefly (one minute more or less). No SOB… just some ankle pain. Forgot the pulse ox.)
As for the pulmonologist: I was disappointed we didn’t discuss my case in-depth, but I understand considering how far behind he was and his staff needed to go home to their families sometime before the kids are in bed. As for me, if it ain’t broke, no need to discuss fixin’ anything.
My daughter drives me, otherwise, I would always ask for morning appointments. She has kids too… at home on e-learning classes and needs to be home to keep them engaged in their lessons. Dad works at home but is useless when it comes to helping the kids lessons. So all my appointments are in the afternoon.
Judging from the reports I have seen here and my own experience, it appears that ECGC therapy may prove very effective at stopping IPF progression.
October 27, 2020 at 3:14 pm #25919Wayne NelsonParticipant
Where do we get this tea extract?
October 27, 2020 at 3:26 pm #25920
October 27, 2020 at 3:54 pm #25921
This is the one used in the study:
https://smile.amazon.com/Healthy-Origins-Teavigo-Green-Count/dp/B000JLA7Y4/ref=sr_1_5?crid=39ULFWMO08RA2&dchild=1&keywords=teavigo+green+tea+extract+600mg&qid=1603831404&sprefix=teavigo%2Caps%2C339&sr=8-5 They used 600 mg (4 pills) daily.
October 28, 2020 at 8:34 pm #25945
Thanks so much for writing, it’s nice to hear from you!
I’m so glad to hear your results with EGCG have been encouraging. The longitudinal survey that PF News is working on was launched a couple of months ago, and closed to new participants as of right now. I look forward to sharing the results when I can, though 🙂
I’m so pleased to hear that you’re doing well and that your recent visit with the pulmonologist didn’t reveal anything of concern, albeit a brief visit. I will keep my fingers crossed that this continues for you for many more years. Did your doctor have any thing to contribute/say about the EGCG and your slowing progression? I’m always curious to hear what doctor’s think of this supplement.
Keep in touch and thanks again for writing. I’m so grateful for the many members of this forum, like you, who share their experiences and how they’re doing with all of us. Take good care!
October 28, 2020 at 9:00 pm #25950
Good question @judyf re: the EGCG! You’re right, until more studies or even quantitative data is captured on patient’s experience with this supplement, it is hard to attribute any positives to the EGCG itself. Hopefully in the near future, some credible data is shared for us to feel a little more certain about it being effective for us. I look forward to that day! Char.
October 30, 2020 at 3:41 am #25971
I asked my pulmonologist if he had read or heard any more about green tea extract or EGCG as a treatment (remember at my last visit he nodded approval to try it and was aware of the NEJM article. At that time he said he wanted to know my experience at my next appointment.)
His response was rather curt. He said he doesn’t get time to keep up on all the literature. I write that off as he being under pressure to catch up on appointments and had no discretionary time to chat. We may get into that at my next appointment when I hope is not running late.
October 30, 2020 at 9:20 pm #25984
Thanks for writing and providing us an update on how the conversation went with your pulmonologist. I can imagine they’re very busy, but it is unfortunate you didn’t have a chance to talk to him about it if you wanted to. Hopefully next time, and that he isn’t running late. I’m always curious what physicians think about the EGCG and the NEJM study.
Thanks for sharing.
March 25, 2021 at 3:27 pm #27868Bruce HawnParticipant
I have been taking Green Tea Extract for about a year now. My thought is that it can only help. I have lost weight, but I am overweight and have been trying to lose weight. I do not believe that the Green Tea Extract has assisted in my weight loss, unless it somehow helps increases will power to cheat on diet or sticking with regular exercise. I have been on diets before I was diagnosed with IPF, and before I started taking the extract and do not believe that I am losing weight at an increased rate.
April 1, 2021 at 10:52 am #27946
Pliant Therapeutics (leaders of the original study along with the University of California) are continuing a trial with EGCG.
April 1, 2021 at 9:27 pm #27953
Yes, I’d heard rumblings about Pliant trying to replicate or continue with the EGCG study when I spoke to one of their staff recently. If you came across any details of their study, do you mind sending it to me via email or posting here? I’d like to keep a pulse on this one!
June 5, 2021 at 10:41 pm #28760
Pliant seem to have done a deal with Novartis for a series of compounds based on their EGCG work… Developing Novel Treatments for Fibrotic Diseases (pliantrx.com)
April 1, 2021 at 9:56 pm #27957
Charlene: I will certainly let you know if I see anything else from Pliant!
June 5, 2021 at 9:31 pm #28757
I have been following the green tea thread for a while and have been surprised that it went so quiet towards the end of 2020 – there were several prolific contributors for a while there, then radio silence… any updates, positive or negative, from those who started their own personal trials would be much appreciated!!
June 5, 2021 at 10:25 pm #28758
I started taking Teavigo green tea extract soon after an article about the study appeared in the New England Journal of Medicine. I also had a CtScan and PFT around the same time. That was around Feb-Mar of 2020. The study participants were taking 600MG daily. I am taking 300MG daily. My IPF as been stable. I had a CTscan and PFT in April of this year (2021). The CTscan showed no disease progress over the previous 13 months. The PFT showed minor improvement over the same period.
Note however that I was diagnosed in 2007 at age 67. My IPF has been progressing at an almost imperceptible slow rate since then.
My experience is so unusual that my use of green tea extract may not provide much guidance for others considering its use to fight IPF.
An overnight oximeter monitoring was conducted in May. It showed that my O2 levels were dropping to unsafe levels several times an hour during my sleep. O2 at 1 liter/hr flow during bedtime was prescribed inserted through my CPAP tubing. I do not otherwise use supplemental O2.
I do carry a pulse-oximeter with me and my readings are consistently in the 94-100% range.
One final note: Since I have been drinking green tea and taking the extract pills my general health has improved. I feel better overall.
- This reply was modified 1 year, 2 months ago by Ron.
June 5, 2021 at 10:36 pm #28761
Well, as you say, you seem to be on a pretty slow IPF track in any case, but the EGCG certainly doesn’t appear to be doing you any harm,…. I mighty give it a try.
June 6, 2021 at 7:06 am #28763
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
March 25, 2021 at 5:47 pm #27873Pete BesioParticipant
@Anonymous – I am a wise guy, and I had concocted a tongue in cheek answer to your post, but I decided not to soil the dignity of the forum by posting it. Anonymous? Inactive? Miracle cure? hmmmmmmmm
April 1, 2021 at 10:18 am #27942
I don’t think anyone here has fallen for a “miracle cure” pitch. We were actually astonished that such a small study made it into the prestigious New England Journal of Medicine. I think the reason it did appear there is that it was conducted by a legitimate group, involved serious metrics, and had such good results. It is my hope that this will lead to further research and larger studies to prove or disprove the efficacy of ECGC treatment for IPF. Unfortunately, proper studies take lots of money and there is not much financial incentive for a company to invest in such research. ECGC can’t be patented. The best hope would be for funding by NIH.
That’s why I took the leap to use green tea extract a year ago and so far my PFT results actually improved. There’s nothing wrong with treating yourself with safe products if you have no mainstream options open. I was taken off both OFEV and Esbriet due to side effects.
April 1, 2021 at 12:04 pm #27947Pete BesioParticipant
My post was in response to another post by “Anonymous” which has since been deleted by the mods. This post did indeed reference that this person had been cured using the herbal supplements provided by WEI. I was pretty sure the mods would delete that post and was hoping they would delete mine to, because without that post in the thread…mine makes no sense.
Pretty sure a lot of us would pay $300 for the cure….most of us are paying significantly more than that per month for medication that can only promise to stem the progress of the disease.
April 1, 2021 at 4:53 pm #27951
Yes, apparently the earlier post was deleted causing a disconnect with yours. I did misunderstand. Thanks for the clarification.
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