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  • rebecca-schrantz-lilly

    Member
    May 18, 2022 at 4:00 pm in reply to: Need to start all over

    Doug,

    I did not know that it is now in generic!  So is your copay reasonable? May I ask what your supplement you chose?

    Thank you so much in advance

  • Cecil,

    My husband was diagnosed with IPF in 2014 and began taking Esbriet and after 8 years, he is still with me and he is remaining stable.  He got sunburn badly early on so sunscreen is necessary! He also still gets kind of spacey a few times a week after taking his medication but within 30 minutes it goes away.  He is alive 8 years later so he can deal with being spacey a few times a week.  I strongly suggest you take either OFEV or Esbriet until there is a cure!

     

    God Bless

  • rebecca-schrantz-lilly

    Member
    June 8, 2021 at 2:12 pm in reply to: David Swain – a brave fight against IPF

    I am so very sorry for the loss of your husband, David.  God bless you and may He give you and your family comfort.

  • rebecca-schrantz-lilly

    Member
    May 27, 2021 at 3:51 pm in reply to: Digital Clubbing in Pulmonary Fibrosis Patients

    This is almost identical to what my husband’s fingers look like.

     

  • rebecca-schrantz-lilly

    Member
    March 16, 2021 at 2:57 pm in reply to: Dad was placed on end-of-life care

    Vishal,

    I so appreciate that you are sharing your father’s story with us.  How wonderful that he has loving family around him that care.  God bless your papa and you and your family.

  • rebecca-schrantz-lilly

    Member
    March 4, 2021 at 3:02 pm in reply to: Life span

    Randy,  I am not sure what you were diagnosed with or if you are taking either Esbriet or Ofev.  My husband was diagnosed in October 2014 and he started out on the generic version, Pirfenex and then on to Esbriet; 6 years together.  He is doing remarkably well and is Pulmonologist is very pleased as to how he is doing.  He also got the 3-5 years statistics which obviously he has surpassed.  I know that someone was frustrated that no one gave a study as to why 3-5 years is not correct anymore.  I am not sure what or if there is a study.  My husband asked his Pulmonologist if Esbriet is even working and not just all the other things that come in to play.  The Pulmonologist just asked my husband why he would get off a winning horse?!  I just know he is doing well and really no side effects other than some days he feels “fuzzy” which does not last longer than a hour or earlier on he got a bad sunburn.  He now wears sunscreen.  I hope this helps to remain optimistic as we are.

  • rebecca-schrantz-lilly

    Member
    February 11, 2021 at 4:07 pm in reply to: New diagnosis age 61

    @chyna

    Charlene,  I too hope that you are negative for ipf but if it is, as Mark stated, get a referral to a pulmonologist especially one that specializes in Pulmonary Fibrosis.

    Renee,  I am sorry that you too have been diagnosed with ipf.  My husband’s dad as well as his grandfather both died with lung issues that I am sure that if it were today, it would most likely be ipf.   Please do not assume that like your siblings, it is a short life span.  As we have learned with my husband,  3-5 years is not the case anymore.  My husband was diagnosed in 2014 and he is doing well.

     

    God Bless

  • rebecca-schrantz-lilly

    Member
    December 26, 2020 at 5:29 pm in reply to: Digital Clubbing in Pulmonary Fibrosis Patients

    My husband does have digital clubbing of his fingers.  That was the first thing his Pulmonologist noticed in early 2014.  It does seem to cause any discomfort but maybe he has had it so long that he no longer notices it?  In any event, he says that he can’t remember (nor I) when he didn’t have the clubbing

  • rebecca-schrantz-lilly

    Member
    July 31, 2020 at 8:06 pm in reply to: Use of medications bought from other countries

    There is no way to import it?  You are absolutely right. There is no problem with the Pirfenidone(generic version of Esbriet)that my husband was on for 4 years.

  • rebecca-schrantz-lilly

    Member
    July 28, 2020 at 2:14 pm in reply to: Use of medications bought from other countries

    I hope that you hear good news! It is hard enough dealing with this disease to only add the stress of how you can pay for it.

  • rebecca-schrantz-lilly

    Member
    July 28, 2020 at 11:21 am in reply to: Use of medications bought from other countries

    @paul-sanchez

     

    Paul,

    My husband’s Pulmonologist did write a prescription because he knew all about the generic from India and people suffering from PF were using the generic before the FDA approved Esbriet.  He knew we were unable to get the insurance company to pay for it, programs were not people like us who had savings but never considered the fact that at $10,000/month, that would wipe us out.  After being wiped out, then we could be on the program.  It can not hurt to at least try if you have tried everything else.

  • rebecca-schrantz-lilly

    Member
    May 20, 2020 at 3:20 pm in reply to: EGCG Green Tea Extract

    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!

  • rebecca-schrantz-lilly

    Member
    May 20, 2020 at 2:53 pm in reply to: EGCG Green Tea Extract

    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.

  • rebecca-schrantz-lilly

    Member
    May 17, 2020 at 12:36 pm in reply to: EGCG Green Tea Extract

    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.

  • rebecca-schrantz-lilly

    Member
    May 7, 2020 at 5:48 pm in reply to: EGCG Green Tea Extract

    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.

  • rebecca-schrantz-lilly

    Member
    May 5, 2020 at 7:18 pm in reply to: EGCG Green Tea Extract

    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.

  • rebecca-schrantz-lilly

    Member
    May 5, 2020 at 10:45 am in reply to: New treatments

    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

  • rebecca-schrantz-lilly

    Member
    May 3, 2020 at 5:29 pm in reply to: EGCG Green Tea Extract

    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.

  • rebecca-schrantz-lilly

    Member
    May 25, 2022 at 5:14 pm in reply to: Need to start all over

    Pete, thank you for the info on the generic.  I already am imagining the disappointment on the cost of the generic.  I guess I am not surprised at the $110 difference in the 2.  It is expensive in Canada but still cheaper for us to get it there than even the generic here.  It angers me that we have to sign up for Medicare.  I am very happy for those that Medicare helps but for those of us that it does not, would it not be a great thing that we choose to elect out of Medicare?!

     

    Thank you!

  • rebecca-schrantz-lilly

    Member
    May 20, 2022 at 1:10 pm in reply to: Need to start all over

    I’m hoping so too.  The insurance agent that is helping my husband says it may take months once the FDA has approved the generic.  I had 4 years of one less thing to worry about when I didn’t have to go to India to get my husband’s medicine.  The stress level has started all over again; trying to get Esbriet we can afford.  I always feel that once the government gets into our lives,  it makes it so much harder or at least in my house.

    Thank you for responding!

     

  • rebecca-schrantz-lilly

    Member
    May 20, 2022 at 11:38 am in reply to: Need to start all over

    Thank you for the information. I really hope it helps the pocket book

  • rebecca-schrantz-lilly

    Member
    May 20, 2022 at 11:38 am in reply to: Need to start all over

    Thank you so much.  I am so glad that you as a veteran are able to have a decent co-pay!

  • rebecca-schrantz-lilly

    Member
    April 14, 2022 at 8:42 pm in reply to: Esbriet – Insurance approval

    Thank goodness for Medicare because we have UnitedHealthCare and they refused to cover my husband’s Esbriet even though his Pulmonologist told him he was doing great on it.  I had to get Pirfenidone in India.  I have a very bad taste in my mouth with UnitedHealthCare.  I am happy it worked for you!

  • rebecca-schrantz-lilly

    Member
    May 17, 2020 at 3:46 pm in reply to: EGCG Green Tea Extract

    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.

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