Kim was a compassionate warrior and a source of comfort to all those who follow this forum. We mourn her passing but celebrate a life that touched so many. I didn’t get to know Kim, but knowing how much she meant to you Charlene, I would just say be strong and continue the fight against this disease. Kim would have it no other way.

Hi Charlene,

Thanks for your comments on my immunotherapy. I’m going to have another go at it in January. I’m sure that by placing the return needle in the top of my hand will not be painful and will work well.

I’m very interested in Mike’s IPF experience. It seems similar to mine. I don’t have the device that allows me to check my oxygen… Read more

Hi Michael,

The topic about the progressive nature of IPF is of much interest to me. I was diagnosed with IPF following chemo therapy for metastatic prostate cancer in December 2017. A CT/PET scan was of concern to my Oncologist who recommended I see a Pulmonolgist. The Pulmonolgist ordered a high resolution CT scan from which my diagnosis… Read more

Hi Charlene,

Mike and I have been friends for 25+ years. We live in the same town in North Jersey. My IPF seems not to have progressed any further than when it was first diagnosed in December 2017. If you recall, I had a very bad allergic reaction to Esbriet and have since stopped. My doctor wanted to put me on Ofev, but I asked that my… Read more

Hi Mike,

Of course I know your story 1st hand, being a long-time friend and person who also was diagnosed with IPF. Over the past year I painfully witnessed your decline and was so glad to hear that you made the decision to seek a transplant. I was absolutely stunned when your wife (Pat) contacted me with the news that you were rushed to… Read more

Hi Charlene,

Good to hear from you. I hope you have recovered from your recent setback.

I am still battling with the itching and scabs from the Esbriet adverse reaction – very annoying and difficult to sleep. I am seeing improvement – definitely on th mend. Stopped taking Esbriet on 5/31. Will not make a decision on OFEV until my next visit… Read more

After being diagnosed with IPF it made me think of my mortality.

I told all members of my immediate family that I would like “The End of the End,” by my favorite musical artist – Paul McCartney played at my funeral. The lyrics are uplifting to me and I would hope comforting to those I leave behind:

At the end of the end
It’s the start of a… Read more

Hi Paula/Charlene,

Sad to say I restarted Esbriet 267 mg tablets on May 17 and had to stop on May 31. I started as follows:

Thursday 5/17/18, 1 tab/2x, Fri – 1 tab/3x, Sat – 1 tab/3x, Sun – 2 tab/3x, Mon – 2 tab/3x, Tue – 3 tab/3x, Wed – 3 tab/3x. Thereafter 3 tab/3x until May 31.

Rash (hives) started again with itching, primarily in… Read more

Sheila,

I am at the very early stage of IPF (diagnosed 12/2017) but have experienced acid reflux that has interrupted my sleep. Tums has worked but more effective has been Prilosec taken in the morning.

When I first met with my Esbriet Support Team Clinical Coordinator he mentioned that he takes a Prilosec once each morning. What I have… Read more

Paula,

My doctor is also putting me back on Esbriet with the small white tablets, stepping up the dose as you described.

My rash has completely cleared, but itching is still with me. My primary care physician put me on another course of Prednisone which ends on May 14.

One other thing my wife found that may be causing the allergic response… Read more

Paula,

Definitely allergic reaction. Most probable cause – An excipient of the 801 mg Esbriet tablet (not the active ingredient). Will never know at 100% assurance.

I live in North Jersey about 30 minutes west of midtown NYC. You?

Al

Paula/Charlene,

Back from my Pulmonolgist visit. Nothing unusual to note. Liver function tests all in normal range. Discussed going back on the 267 mg small tablets. Will start again with 3 tabs/day for 2-3 days, then increase to 6 tabs/day for a few days and finally back to 9 tabs/day. Will not go back to 801 mg tablets.

Blood pressure… Read more

Paula,

I was not aware that Esbriet was going off patent soon, but a bit surprised that Genentech bumped up the cost to the patient since it is an orphan drug and can’t imagine a generic manufacturer going after the relatively small revenue it could capture.

The last 4 years of my career I worked for a pharmaceutical contract manufacturer.… Read more

Paula,

I had an allergic response at about the 3rd day in with the 801 mg brown Esbriet tablet. I’ve been off the drug for about 2 weeks and have an appointment on Tuesday, May 2 with my Pulmonolgist.

Hives at first appeared slowly, spreading with each day until they covered every part of my body except my face. The bumps subsided after a few… Read more

Have not felt this good in more than a year. I’m 2 days from completing a 2-week regime of descending Prednisone for the hives condition that started about 3 weeks ago.

The only difference to the medications/supplements that I’m taking is the increased amount of vitamin D3. Together with a bone health supplement, a mult-vitamin and most… Read more

Scott,

In response to your March 14th post. It appears we are both at about the same stage in IPF and very close in age. I am encouraged by the length of time many of the people on the forum are living with the diagnosis as opposed by the 2-3 year life span that is found on the internet. It’s such a shame to read about young people who have… Read more

Hi Charlene,

You will find a wealth of information by a Google search on Dr. Joel Fuhrman.

I don’t know if you are an ebook fan, but for the past several years I have not purchased a hard cover book. Everything is either in iBooks or Kindle Amazon. I love this way of reading because it is so easy to search, bookmark, highlight and add personal… Read more

Hi Charlene,

One of the Esbriet side effects is loss of appetite which would generally lead to weight loss. I was on prednisone for months during my chemo. At first I lost weight then gained. At the end I was about 190. I went down to 184 a few weeks after. Since I started following the Fuhrman recommendations on Feb 24 I’ve lost 6 lbs. I would… Read more

Hi Joyce,

I will be starting week 2 of Esbriet on Sunday. So far I have not experienced any problems. Thank you for posting your experience. For this I am encouraged about a smooth transition to 3 tablets/day.

Have you had liver function tests since you began taking Esbriet? Best of luck, I hope you continue to feel well.

Al

Hi Charlene,

To answer your recent questions, I like to walk in all weather conditions except when it is raining or oppressively hot. On very hot days I may wait until evening when it cools down. Since starting Esbriet I will need to be more careful to cover up and use sunscreen.

As far as the Fuhrman diet, my cardiologist recommended that… Read more

Hi Charlene,

I walk only outside. I take a fairly steep climb uphill which takes about 5 minutes past my home, downhill and then back uphill again. Total time is about 45 minutes. I am not out of breath and don’t stop during the walk. I walk in all temperatures, except if it is very hot and humid. At this point I do not struggle, probably… Read more

Scott,

I’m glad to hear that you are not experiencing side effects with Esbriet. I was unaware that a single 801 mg tablet could be taken instead of 3 capsules at every meal.

I started taking Esbriet 2 days ago, one 267 mg tablet at each meal. The initial shipment contained 207 coated tablets. Week two I am to take 2 tablets, 3x/day. Week… Read more

Charlene,

My friend was not actually a first responder. He was working in the ground zero area for the gas/electric company during the massive clean-up period. I had another very good childhood friend (deceased) who was on his 2nd day on the job as a National Park Ranger, assigned to Battery Park. He saw the 2nd plane hit the World Trade… Read more

Charlene, thanks for your prompt response to my post. It is so important to ones psychological well being to know that others with a similar affliction care.

I live in North Jersey. Before my diagnosis I had never heard of IPF. Being that it is so rare, I’m astonished that my friend, who lives in the same town, is afflicted by the same… Read more

Hi Charlene,

Thanks for providing information and enabling information from IPF individuals to be shared.

I was diagnosed with IPF in December 2017 after CT/PET scan was performed after 6 months of chemo treatment for recurrent prostate cancer. While the scans showed that the cancer was under control, it showed several other problems:… Read more