Last week I received my first 3 months supply of 801mg Pirfenidone from Mark Cuban’s Cost Plus pharamacy. The cost was amazing at less than $200 per bottle. The process involed registering on their website, printing out an instructions sheet, which I gave to my doctor, who then submitted my 3 month supply prescription on-line. About 10…

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Hi Christie,

I was diagnosed with Gerd about 25 years back and, obviously, long before my IPF diagnosis.  I was prescribed several PPIs, which none worked that well so my gastroenterologist recommended the Fundoplication procedure, which I agreed to.  Preparation included the manometry test, which established how tight to make the stricture. … Read more

I am 74 and was diagnosed Oct. 2017.  Like just about everyone, I was told the median life expectancy was 3-5 years.  Since I had no symptoms and my diagnosis was initially based on a CT scan of my abdomen due to kidney stones, I was told that my condition was caught early.  To this day I have not received any prediction on how long I might… Read more

All,

I was diagnosed with Hemocrhromatosis in 2015. I immediately started treatments (phlebotomies) to remove stored iron in my body and lower ferritins in my blood. Since my diagnosis, every six months my blood is checked for raised ferritin levels and, when elevated enough, I have another phlebotomy.

I was also diagosed with IPF in… Read more

Hi Charlene,

I have not considered the possibility that there may be a correlation between my IPF and nerve pain; nonetheless, I have experienced nerve pain for at least 3 or 4 years.  I was first diagnosed with IPF last October.  Initially, I thought the nerve pain was due to arthritis in my back, but eventually it was suggested I see a… Read more

Update:

I have been taking Esbriet for 4 weeks now and no problems.  My second months prescription arrived a few days back and I was surprised that it was (90) 801 mg pills.  I checked with the Esbriet nurse, my pharmacy and my doctor and no one knew who made the decision for me to change to the larger brown pills.  To my surprise, since I was… Read more

Hi Charlene,

I can’t help but think that you are pursuing a lung transplant and, if so it’s understandable based on the Stanford study, that you would be very concerned about your need to take iron supplements.  I also imagine there must be a way to maintain at least minimum iron levels without creating the study’s referenced… Read more

Hi All,

The phlegm discussion has me thinking that my allergies are possibly not the total cause for my phlegm buildup.  I have had allergies for years, but since last October I have experienced a more serious onset.  Mostly runny nose, post nasal drip and cough with some phlegm.  Simultaneous to the October flareup I received my first… Read more

Hi Charlene,

It’s been over a week since my last post.  I have now completed my first 9 days of Esbriet and I have had no side effects other than some very mild queezieness.  I have been eating a lot and gaining weight – got to learn to eat less, but still eat enough to buffer my meds.  I also saw my pulmonologist yesterday, did well on my 6… Read more

Hi Aishia,

Thanks for your helpful tips.  For now I am eating more food than usual – half a meal, then the pill, then the 2nd half.  I am also drinking water.  I think that once I get to 9 pills a day, assuming I can tolerate 6 then 9 a day, I will see if I can cut back on food.  Your banana and coffee breakfast sounds promising.

Thanks… Read more

Hi Charlene,

In response to your question about my local support group – the same two people were there.  I made three along with the hospital staff that attended.  I found out the group started last October so it is still new and just getting started.  Surprisingly there are not more IPF attendees.   There has to be more of us in the… Read more

Hi Charlene,

I think our traveling days are over.  In recent years my wife has developed severe food allergies so dining out is always a challenge.  Eating food in a foreign country would definitely be even more difficult.  Fortunately we were able to travel when we were younger.

The crackling was one of my first symptoms along with the… Read more

Hi Judi,

Glad to hear your husband hasn’t experienced any problems with his meds.  Hopefully, losing 10 pounds is a good thing.  Also, hoping that his progression has slowed or possibly stopped.

Best regards,

Shaw

 

 

Joyce, Marilyn, Ann, Luciane, Betty, Paul, Tammy and Marlene –

Thank you so much for sharing your experiences with Esbriet – good and bad.  They have given me the confidence to begin my treatment this morning.  I have now taken two pills, both with full meals.  If anything I only sense very minor nausea.  I suppose it will take a few days or… Read more

Marlene,

I haven’t traveled much since my first diagnosis last October, so I don’t know if or what altitude might cause me breathing difficulties.  Hopefully, going forward, 2,000′ won’t pose a problem.

I know I said I didn’t have any symptoms at the time my IPF was first identified, but actually that is not 100% accurate.  My doctor… Read more

Hi All,

I should start my treatment with Esbriet as early as this afternoon and I am concerned that I won’t be able to tolerate it.  Can anyone share their initial experience – good or bad – and provide some tips that proved sucessful?  Also, did it take about 3 months for the side effects to go away as Esbriet claims?

Shaw

 

Hi Charlene,

My wife and I are in southern Nevada on the far west side of Las Vegas, 15 miles from the strip.  The elevation is about 2,000′ so we get only a light dusting of snow every year or so – pretty mild winters.

I’ve had a problem with kidney stones for many years.  Early on they would start with extreme nausea, then vomiting… Read more

Hi All,

I just found this site and registered.  I live in Nevada, but I suppose it doesn’t matter where I am as we all have at least one thing in common.

To respond to the diagnosis thread – this past October,  I went to the lab for a CT scan expecting to see a few kidney stones.  The scan caught the lower lobes of my lungs identifying… Read more