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    • #24890
      Dear Forum Members,

      First and foremost, I’d like to give a giant thank you to everyone who has offered to lend their experience regarding EGCG to the project BioNews Insights is undertaking about green tea extract and pulmonary fibrosis (PF). We couldn’t examine this without your help!

      The team working on this project and I just wanted to provide you with an update. We’re working hard on ironing out the details of this project, including the survey design, and what information will be helpful for us to know in the short and long-term regarding EGCG and PF. We also wanted to share that we had a positive conversation with the lead investigator of the New England Journal of Medicine (NEJM) study on EGCG, and are discussing some collaboration possibilities.
      One thing I forgot to mention in my original post about the EGCG project is that the survey, which will ultimately be sent to all participants, along with a finalized inclusion/exclusion criteria, is only open to US residents at this time. This is due to the General Data Protection Regulation (GDPR) and differing rules for countries outside of the US.

      If you’d like to lend your voice and experience with EGCG to this project, to help us better understand any relationship between EGCG and PF, especially pertaining to the symptoms of this cruel lung disease, we’d love to hear from you. In particular, we are seeking patients who are not taking either of the two FDA-approved drugs for IPF (Ofev or Esbriet) or taking EGCG to participate, which will help us establish a control group.
      If you’re interested, please email Charlene at: [email protected]. If you’ve expressed interest in helping us, but haven’t heard back, please also be in touch.
      Many thanks on behalf of the BioNews Insights team.
    • #24919
      joe hick
      Participant

      Can anyone give me the exact name of the Green Tea Extract used in the study??

      Joe Hick

    • #24927

      Hi @joehick0529

      I hope you’re doing well.

       

      The study references the Teavigo brand of EGCG. From an email correspondence with them, this is what they recommended verbatim: “A few brands that we know well and would recommend include Healthy OriginsPure Encapsulations and Swanson”

      They also mentioned ensuring the product includes the Teavigo name.
      Hope this helps?
      Char 🙂

    • #24930
      Mona Klein
      Participant

      Hi Charlene,

      I would like to go off the Ofev and try the ecgc it sounds very promising. I’m very early in the finding of IPf as it was found by accident, I have no symptoms I’m only 53.
      I would really like to try natural remedies, I don’t like the doctors always giving you pill for this and that and the side effects of Ofev I can’t take anymore, so if you have any information that would help me I would really appreciate it. Thanks Mona

    • #24944
      john styles
      Participant

      Update on my EGCG, I stopped the EGCG about 10 days ago, noticed my lung saturation’s had deteriorated a little. Real strange as the lung saturation’s  improved a little when I started EGCG. Now the saturation’s have improved again. I may start EGCG again but first I want to get a test to see if my SED rate is normal or inflated, ( SED rate measures inflammation. )

    • #24973
      Steve Dragoo
      Participant

      @caneelbay1 – Thanks for the update, John.  Stay well… – Steve

    • #24981

      @mklein

      Hello Mona,

       

      Thanks so much for writing and expressing an interest in our EGCG project. We’re still ironing out the details on how to proceed, but your interest means a lot to us. Again I’m so sorry to hear about your IPF diagnosis, this cruel disease spares no age it seems… I hope you’re doing ok! 

       

      Regarding Ofev, I want to ensure all participants know that we at BioNews must remain neutral when it comes to  treatment programs.  You and your physician  are the only ones who should influence your treatment plan.  BioNews Insights’ role is to gather the information patients provide and then analyze it in hopes that it will benefit the entire community.

       

      I’m also on Ofev 150 mg but had to titrate off it twice before my stomach could finally tolerate it – have you read the forums thread on managing Ofev symptoms? It can be found here: https://pulmonaryfibrosisnews.com/forums/forums/topic/side-effects-of-ofev/ (I think Libby replied to some of your specific questions). Be well!

       

      Sincerely,

      Charlene

    • #25012
      Jan Shabra
      Participant

      Has anyone read the recommended time to wait before eating in the morning?  I have seen 1 hour to 4 hours on posts.  Four hours seems like a long time to wait after fasting through the night.  Also – decaf vs. caffeine.  Caffeine makes my essential tremor off the wall, so I ordered decaf.  I wonder if  taking the decaf affects the effectiveness.  Anyone know?

    • #25018

      Hi Jan,

      Are you referring to the recommended time to wait before eating + taking the EGCG in the morning? I can’t recall reading that in the study but I can go back to look for you. Alternatively, the study can be found HERE. I suppose it depends on whether patients are taking either of the anti-fibrotics with it, as I know I can’t take Ofev on an empty stomach.

       

      Can anyone verify this for Jan?

      Thanks for writing!
      Charlene.

    • #25021

      @caneelbay1

      Hi John,

      Thank you so much for the update on this! Sorry to hear your saturations decreased upon taking the EGCG. Could another factor be the cause of that – viral infection, reduced air quality or something? Seems strange, like you say, that the saturations increased at first but then went down. Did you get the SED test done again yet? So appreciate our correspondence, thanks for the update. Thinking of you!

    • #25040
      Libby Fisher
      Participant

      I have been taking the equivalent of 600 mg EGCG for over 2 months now.  I chose the NOW brand because it is almost completely decaffeinated and also because it spells out the exact mg of the catechin on the label which was not so  obvious with other brands, especially ones that just call themselves Green Tea Extract.  I am finding confusing information about when to take the dose!  The first hit now when you do a Google search on dosing of EGCG is this from NIH saying that the extract is inhibited if you take it with food.

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4665468/#:~:text=Therefore%2C%20ingesting%20food%20at%20the,to%20maximise%20its%20systemic%20absorption.

      This was published in 2015 so it’s obviously in need of updating.

      There are also studies and summaries I’ve read which warn of dangers of taking the EGCG without food .. particularly the possibility of liver toxicity.  Considering that OFEV is already a really powerful drug to be processed by my liver, I’m really reluctant to take the EGCG on an empty stomach unless someone definitely says that it’s safe.

      Lots of confusing information and I’m not a scientist… here’s a study from the EU.   They seem to have concluded that 800 mg is a definite risk for liver toxicity… are we pushing it too close with 600 mg?

      https://efsa.onlinelibrary.wiley.com/doi/10.2903/j.efsa.2018.5239

       

    • #25060

      Hi Libby,

      Thanks so much for sharing this information, especially the URL links on EGCG as they are credible sources of information which is always appreciated. I can certainly understand your concern in terms of confusing/conflicting information, which may even differ based on the dose/brand of EGCG. Would the manufacturers of the one you’re taking be open to discussing the topic of taking EGCG with/without food with you, do you think? I know Teavigo (which was the EGCG used in the NEJM study) was open to corresponding with patients. Thoughts?

      Regarding the dosage (600 mg), I can’t advise one way or another but the 600 mg was referenced int he NEJM study which is why I think most patients are sticking with that dosage amount. I do understand the concern though when it comes to liver toxicity as Ofev is tough for the liver for sure! Can anyone else speak to literature or conversations they’ve had with their physician about the dose of EGCG and liver toxicity?

      Char.

    • #25141
      JR German
      Participant

      Hi everyone,

      I’m one year post diagnosis with only the dry cough and a hand full of episodes of shortness of breath.  Covid-19 has thrown a wrench into followup with my pulmonologist (i.e., closing PF lab, etc.).  I’m hopeful my next appointment in a week will go as planned as I want to ask about the natural products available for IPF treatment.

      This topic regarding EGCG is quite interesting.  As a retired medical person, I enjoy reading facts presented by qualified authors rather than relying upon “Dr. Google’s” advice.

      I have subscribed to this discussion and will followup by researching the product manufacturers Teavigo has recommended.

      Thanks!

      JR

       

    • #25142
      Steve Dragoo
      Participant

      Hey JR, welcome in.  There are lots of posts about useful items and supplements here such as class 4 laser, Wei Laboratories, supplements like serrapeptase and nattokinase, D3 and K2, B complex and more of course.

      I served in the US Navy in cardiology (enlisted) and have several family members working in various medical fields. What was your field of expertise?

      I have had this lovey disease 4 years and stopped using O2 over a year ago more because I returned to the Philippines and meds are a lot different here but I rarely feel the need for O2 and am in my 70’s with a couple of other significant issues. If I get the ccp virus I will not survive it so I am pretty careful (not fearful) of what I do.

      Safety and wellness – Steve

    • #25153

      Hi JR,

      Thanks for your note and sharing your thoughts with us. Yes, the pandemic sure has made some unexpected/delayed appointments in healthcare, hasn’t it? i hope you get your next appointment in-person as it makes such a difference. Glad to hear this discussion is of interest to you re: EGCG 🙂

      Take care,
      Char.

    • #25155
      Rene Hakkenberg
      Participant

      Hi All,

      This is my experience: I took 600 mg Teavigo EGCG for 2 months, in the morning 1/2 hour before having breakfast. I did not find any improvement in my SOB but I did have weight loss, which I cannot afford and doctors have warned me not to loose weight. I am on Esbriet which lowers my appetite. Then I spoke to a prominent IPF Pulmonologist who recommended me to stop taking the extract, based on possible liver damage and weight loss. So I stopped after after taking EGCG for 2 months. I will start taking it again if the result of this study justifies it.

      rene

    • #25163

      Hi Rene,

      Thanks so much for getting in touch and sharing your experience with EGCG. Sorry it wasn’t more positive, and contributed to additional weight loss for you. We completely understanding stopping it due to that. The recruitment for the EGCG project is coming along, and will be concluded tomorrow (Wed. Aug 5). Then we hope to launch the survey shortly after that, and have some information collated based on the experience of others’ taking it. I hope the information that emerges is helpful to others! Thank you for updating us, and I hope you continue to do well, my friend.

      Sincerely,
      Charlene.

    • #25174
      Rene Hakkenberg
      Participant

      Hi Charlene, in my  words above it appears that I blame my weight loss in the EGCG. That is not correct. Although my weight loss could have been caused by the EGCG but also may be due to the lack of appetite resulting from taking Esbriet.

    • #25180
      Michelle
      Participant

      I found Life Traditions ECGC a more regulated company.

    • #25182

      Hi @michelleb

      Thanks for sharing this information with us! I suspect it will be helpful for others as they seek information about EGCG. I will respond to your email shortly as well.

      Many thanks!
      Char.

    • #25186

      @renehakkenberg

      Hi my friend, so nice to hear from you! I think of you often, and hope you’re doing as well as possible.

      Thanks for the clarification re: EGCG + weight loss. I know it can be a side effect of the extract, but certainly is something that is caused by the unpleasant side effects of Esbriet and Ofev. I hope you’re tolerating Esbriet ok since re-starting it. Lately, I’m finding I’m quite tired to prepare meals but smoothies and shakes (packed with proteins and good fat) is really helpful when it comes to the side effects of Ofev. Not sure if you’ve tried these, but I’d be happy to email you some recipes if interested. You know how to reach me if so! 🙂

      Hugs to you.

      Char.

    • #25188
      Charles
      Participant

      Is anyone using a green tea extract (EGCG) with caffeine that is comparable to Healthy Origins Teavigo, that does not have caffeine. Would like to find a capsule that is 150 mg per and the same size capsule or smaller, but contains caffeine.

    • #25190

      Hi Charles,

      Great question! Not one I can answer based on my experience with EGCG but someone may be able to help you out. @michelleb , does the extract you’re taking have caffeine in it?
      Char.

    • #25216
      Michelle
      Participant

      Life Tradition has a decaffienated 725 mg all brands are available through amazon I chose Life Tradition bc of their clean manufacturing & natural ingredients sthout fillers.

    • #25219

      Thank you for sharing this @michelleb ! I thought you’d mentioned there was a decaffeinated brand, but I couldn’t remember. @charles – I hope this helps 🙂

      Sincerely,
      Char.

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