Rebecca Schrantz-Lilly

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…[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 onc…[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

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 h…[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 yea…[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 wo…[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 at…[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 hus…[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 fu…[Read more]