I am praying that you will find some relief for your mom. I know how hard this must be on all of you. I truly understand where you are coming from.

First of all, I am so sorry for what your mother is going through as well as her family. My husband was diagnosed with IPF in 2014. We were blessed to have been given 10 years of a slow progression of it. Is she on any of the medications as in Esbriet or Ofev? Have you looked at any Laser therapy with the research from Dr. Andrew Hall who…

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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… Read more

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… Read more

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

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

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

So I am back at finding the best way to get Esbriet without paying an arm and a leg again.  Unfortunately, my husband is losing his insurance that covers the Esbriet because now he HAS to sign up for Medicare.  It is like we are being punished because we will end up paying up front $3000 then $550/month. We are currently paying a premium we can… Read more

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!

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… Read more

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

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

 

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.

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… Read more

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… Read more

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

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.

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.

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… Read more

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… Read more

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… Read more

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… Read more

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.

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.

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… Read more

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

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… Read more

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).… Read more

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

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… Read more

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… Read more

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… Read more

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… Read more

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… Read more

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… Read more

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… Read more