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Rebecca Schrantz-Lilly

Home Members Rebecca Schrantz-Lilly
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@rebecca-schrantz-lilly

So apparently there is a generic version of Esbriet and the manufacturer is Sandoz! Is anyone on the generic version and if so, what specialty pharmacy are they using? View
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    Rebecca Schrantz-Lilly replied to the topic EGCG Green Tea Extract in the forum Clinical Trials 3 years ago

    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 p…[Read more]

  • Profile picture of Rebecca Schrantz-Lilly

    Rebecca Schrantz-Lilly replied to the topic EGCG Green Tea Extract in the forum Clinical Trials 3 years ago

    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.

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    Rebecca Schrantz-Lilly replied to the topic EGCG Green Tea Extract in the forum Clinical Trials 3 years, 1 month ago

    Penny Rylee:

    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.

  • Profile picture of Rebecca Schrantz-Lilly

    Rebecca Schrantz-Lilly replied to the topic EGCG Green Tea Extract in the forum Clinical Trials 3 years, 1 month ago

    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…[Read more]

  • Profile picture of Rebecca Schrantz-Lilly

    Rebecca Schrantz-Lilly replied to the topic New treatments in the forum Clinical Trials 3 years, 1 month ago

    I have the same beliefs! Thru all the testing to find out what this virus does, they may find a cure for PF.  I believe there is going to be good coming out of this virus.  I really do believe that

  • Profile picture of Rebecca Schrantz-Lilly

    Rebecca Schrantz-Lilly replied to the topic EGCG Green Tea Extract in the forum Clinical Trials 3 years, 1 month ago

    I ordered it from Healthy Origins on Amazon.  I read the replies and one individual participated and here is his reply:

     

    <span style=”color: #111111; font-family: ‘Amazon Ember’, Arial, sans-serif; font-size: 13px;”>I participated in a study group for 2 weeks taking four capsules of this green tea. The study was being done by a noted…[Read more]

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    Rebecca Schrantz-Lilly replied to the topic EGCG Green Tea Extract in the forum Clinical Trials 3 years, 1 month ago

    This is what the report stated:

     

    <span style=”color: #484848; font-family: Roboto; font-size: 18px;”>”Half were given oral capsules of EGCG (from </span>Teavigo<span style=”color: #484848; font-family: Roboto; font-size: 18px;”>) at a daily dose of 600 mg for 14 days before the biopsy, while the other half were not (untreated group). Tissue…[Read more]

  • Profile picture of Rebecca Schrantz-Lilly

    Rebecca Schrantz-Lilly replied to the topic EGCG Green Tea Extract in the forum Clinical Trials 3 years, 1 month ago

    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

  • Profile picture of Rebecca Schrantz-Lilly

    Rebecca Schrantz-Lilly replied to the topic Use of medications bought from other countries in the forum Ofev (Nintedanib) 3 years, 1 month ago

    Piet you are right! There is indeed a generic version of Esbriet; Pirfenex  was on this for 4 years due to the fact that his insurance refused to cover Esbriet.   People were on Pirfenex here in the states before Esbriet was approved by the FDA in October 0f 2014.  We had it shipped to us from India.  I’m not saying that there are not steps to t…[Read more]

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    Rebecca Schrantz-Lilly replied to the topic Use of medications bought from other countries in the forum Ofev (Nintedanib) 3 years, 2 months ago

    Randy,

    My husband is on Esbriet since 2014.  Our insurance company would not cover it so we got the generic version of Esbriet, which by the way  many people with PF were on this generic brand before the FDA approved Esbriet, from India.  We were getting the generic brand for 4 years before our new insurance company covered Esbriet.  We at tim…[Read more]

  • Profile picture of Rebecca Schrantz-Lilly

    Rebecca Schrantz-Lilly replied to the topic Recently diagnosed with IPF & Honeycomb Lung in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 years, 1 month ago

    John L, yes, if you go on Esbriet there is a change but to say drastic is drastic!  My husband has been on Esbriet since January of 2015 and it has immensely slowed down the progression of the disease.  He has overcome what side effects he had in the beginning and now more than 4 years later, he is so use to it that he does not even think about i…[Read more]

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    Rebecca Schrantz-Lilly replied to the topic laser therapy in the forum Pulmonary Fibrosis Awareness & Advocacy 4 years, 3 months ago

    Dr. Hall,

    thank you so much for sharing your story as well as all of your information. I really appreciate the humor in a story about something so tragic as Pulmonary Fibrosis.  If it were not for some humor, I would be hysterical.  My husband was diagnosed in 2014 and it after a few months of pretending it really was not the case, I spent the n…[Read more]

  • Profile picture of Rebecca Schrantz-Lilly

    Rebecca Schrantz-Lilly replied to the topic laser therapy in the forum Pulmonary Fibrosis Awareness & Advocacy 4 years, 3 months ago

    Andy,

    Thank you for your story! My husband was diagnosed in 2014 with IPF.  He is on Esbriet’s generic which we get out of the country since our insurance won’t pay for it.  He is maintaining but I would love to find someone in the Phoenix area that has the class 4 laser therapy device.  Any information you can provide will be most ap…[Read more]

  • Profile picture of Rebecca Schrantz-Lilly

    Rebecca Schrantz-Lilly replied to the topic Vitamin D Insufficiency in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 5 years, 2 months ago

    Charlene,

    My husband’s Pulmonologist never mentioned anything about checking out his Vit D level.  As soon as my husband was diagnosed, I started researching about the disease and what we could do naturally.  Amazing what this little, cheap supplement can do.  I automatically just started the 5000 IU’s and then went out into the sun without su…[Read more]

  • Profile picture of Rebecca Schrantz-Lilly

    Rebecca Schrantz-Lilly replied to the topic Vitamin D Insufficiency in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 5 years, 2 months ago

    My husband who has IPF is on 5000 IU a day and I truly believe that with all the data out there on Vit D, I think it is one of the most important vitamins to take.  If you do some research on Vit D, you will find that it is beneficiary for your gut and we all know that what is going on in our gut has a lot to say what is going on with  our h…[Read more]

  • Profile picture of Rebecca Schrantz-Lilly

    Rebecca Schrantz-Lilly became a registered member 5 years, 2 months ago

    • Profile picture of Charlene Marshall
      Charlene Marshall replied 5 years, 2 months ago

      Hi Rebecca, welcome to the PF forums. Thanks for joining us!

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