I am so very sorry for your loss. Hold your memories close so that you have them when you need them the most. IPF is an insidious disease and one that many family members and friends struggle to understand. As a fellow IPF sufferer, I do understand the heartbreak that comes along with it.

Take care of yourself.

I was also informed of this news.I am hoping we will get more details as to why in the coming days.

I had been in this trial since May 2019. Yesterday trial participants were notified that the trial has been cancelled effective immediately. Not much yet in the way of details but hopefully we will get some explanation in the coming days as to why.

After about 6 months on OFEV, I started experiencing some gum line redness, swelling and pain. My regular dentist recommended I see a periodontist, which I did. His office did a very “deep” cleaning and then recommended that I see my regular dentist every six months and the periodontist every six months, so having my teeth cleaned every… Read more

One additional thing is that I do a series of stretches before I even get out of bed each morning. I am still on my nighttime O2 while doing it. I do eight leg raises on each side, I do an exercise where I lift my knees, cross them over each other and rock from side to side, which loosens up my hips. I do a cross over leg exercise where I… Read more

Charlene, I do know what you are saying. Can be so hard to exercise but I always think back to when my pulmonologist told me that if he had to choose (and he didn’t say he wanted to), he would choose me continuing to exercise over taking Esbriet as he felt it was that important.

I work out with a personal trainer twice a week, using FaceTime.… Read more

John, if you are dropping to 77, you really need to stop exercising until you have supplemental oxygen to use to do it safely. It’s way too hard on your heart and other internal organs to go that low and stopping to “let your O2 catch up” is not good enough.

Please contact your pulmonologist and let him/her know that this is happening so they… Read more

I had the same concerns and discussed them with my doctor. He said that I should use a green O2 tank if I have to be outside around people as he expressed the same concerns. My husband tried to figure out if he could add a carbon filter to the intake areas beneath the mesh but he quickly realized that it would restrict the air to be… Read more

Charlene, one thing I found is that smaller meat markets/butchers still have a pretty good supply and some are delivering here in the states. Perhaps you can find one in your part of Canada who could deliver as well or at least allow someone to pick up products on your behalf. Yes, some meat processing plants have had to close as so many… Read more

I am so very lucky that my husband is an excellent caregiver. Not only is he helping by receiving all deliveries and doing a lot of the cleaning, he helps me mentally so much! He also set up a six minute walk test in our condo building underground garage so that I could complete one that was scheduled for last week. I sent the results to my… Read more

A few months back, my  husband and I tried Silver Palate, which I believe was touted by AARP in the US. The meals were interesting and creative but one size definitely doesn’t fit all! I was satiated but my husband was not. We didn’t order again as we would’ve needed three for one meal for the two of us and it just wasn’t cost effective. I… Read more

My doctor asked initially about alcohol use and I said I usually drank a glass of wine with dinner – not every night but maybe five of seven. He didn’t seem concerned but did say I needed to have regular liver enzyme blood tests once on (first) OFEV and then (second Esbriet). One time, I was high in two of the enzymes so we discussed use… Read more

I could not do this on my own. I have a wonderful husband and our marriage is 44 years strong! He is thoughtful and knows when he needs to step in to help me and when to let me do things on my own. Believe me, this is not a universal trait! But I love it about him. While he has some health issues of his own which I try to help him with, he puts… Read more

Sorry – meant health!

I get a flu shot every year and did so even before I was diagnosed with IPF as my Mom had COPD. I always ask my family members to get flu shots so I can be around them.

Recently, my nephew came down with Influenza type A even though he had a flu shot. They put him on Tamiflu right away and he is getting better. He lives in a different state… Read more

I finished the survey but skipped a couple of questions. The first question regarding the number of hospitalizations didn’t have “none” as a choice. I can’t remember the second one but that one also did not have an option I could choose for it.

I wanted to let you know.

The same thing happened to me.

I have an Apple watch and downloaded an app that measures the altitude. Living in Colorado means that I am almost always at 5280 ft (mile high city!) but I have used it in other locations as well as I sometimes need to bump up my POC if I am at higher altitudes and often don’t even have to use it at sea level or close to it.

I do use… Read more

Charlene, I know this post is about gabapentin but I want to also throw out that my pulmonologist at National Jewish Health prescribed Baclofen (10mg twice a day), which is an off-label drug used primarily for people with MS. I had a dry cough in 2015 which prompted me to go to the doctor and that set off a whirlwind of tests and… Read more

When I read about their work and having received the Nobel prize, I was really hoping it would do something for our community!

Charlene, I don’t consider myself disabled and yet I did request the right paperwork from my doctor to get a placard. I don’t use it unless I am feeling particularly tired or if it’s really cold, which can affect my breathing. Since I carry my POC with me to the grocery store or other shopping, I can pass up the handicapped spot most of the… Read more

I met with my pulmonologist yesterday and asked him again about this. His reading showed him that obstructive lung diseases, e.g. COPD may benefit but he does not recommend it for restrictive diseases, e.g. IPF.

John, I saw my pulmonologist yesterday and asked him about this. He’s at National Jewish Health and is very active in various research activities. He had never heard of it. He went to the link you gave us and said he will look into it but from his brief reading suggested it sounds more like an emphysema process rather than something for IPFers.… Read more

Personally I think being dehydrated is linked to O2 use. It dries out my nasal passages a lot. I use it at night and with exertion but not while sitting at rest. In the morning, I try to drink about 14-16 ounces before I have coffee to ensure I am hydrated before the caffeine causes more dehydration.

I am doing well with Esbriet and now I am… Read more

I find that if I have a glass of water right after some wine and just consistently stay hydrated, I don’t get the headache/hangover you have been getting. On occasion I have noticed a headache after having wine the night before but rarely if I drink enough water or other liquids.

I have significantly cut back though as I used to have wine every… Read more

Fran, I echo what Mark said about using whey protein to make smoothies. I use almond milk and frozen blueberries in mine – I use a blender and it becomes like a milk shake but healthier. It helps me to get enough protein (I think the Whole Foods brand I buy gives you 20 grams in each serving) as I don’t always get enough each day. Eating… Read more

Charlene, thanks for sharing this link. Dr. Swigris is my pulmonologist at National Jewish Health and I feel so fortunate as he is really, really good at his job!

What I found funny was the diagramming in the video as he does this kind of drawing whenever I ask questions about different lung related things. I often go home with his drawings… Read more

I live in Denver CO, am not a veteran and use National Jewish Health for my lung care. They are great so the person from Denver should make an appointment with them, if they haven’t already tried to do that.

I was diagnosed in January 2016 based on a dry cough that wasn’t going away. My primary doctor listened to my lungs, mentioned… Read more

Mark, my pulmonologist prescribes Baclofen (10mg each; twice a day) for me. It has really helped my cough but I have never seen anyone else who takes it. It was initially for MS but my doc prescribed it for my IPF cough and it works well.  My doc is at National Jewish Health and presumably has prescribed it for others as well.

Denny, I am in the Galapagos trial at National Jewish Health, Denver, CO. I have been taking the meds for about two weeks now. And, you are right: one third take  the full dose, one third take a half dose, and one third takes a placebo. With no real side effects, I don’t know which dose I am getting.

Charlene, I am on Esbriet; started with OFEV.

I have taken both of the anti-fibrotics and have had a couple of nose bleeds but am also on a blood thinner since a pulmonary embolism in August last year.  None of the medications seem to have caused the nosebleeds. I live in Denver, which is very dry and I attribute the ones I have had to that.

Since they tend to build as you read each one, I would start with the first and then, if you like it, you can go on to the next. I ran across her when looking on Kindle for a particular genre and since I loved the first one, I continued on.

I have read all the available books by Tana French. She is an American-Irish writer of murder mysteries (The Dublin Murder Squad) which are very good. I regularly scan Kindle to see if she has written anything else and recently downloaded her most recent book. She now has seven out:

1) In the Woods

2) The Likeness

3) Faithful Place

4)… Read more

I don’t take OFEV anymore as I switched to Esbriet in September last year. However, while I took it for a year, my doctor told me that eight hours between doses was perfectly fine. I would often eat a half of a protein bar with either dose and it helped with the gastrointestinal side effects. So did taking a half dose of liquid Immodium every other day.

My heart rate has increased, both at rest and while exercising. I am around mid-70’s at rest and it can go as high as 145-150 during a vigorous walk or weight lifting. My pulmonologist said that Esbriet can do that.

I have seen a lot of posts regarding how to control the IPF cough. I am pretty lucky that I don’t cough much – at least right now. But a cough is what led me to a doctor and my diagnosis of IPF. My pulmonologist prescribed Bacflofen for me (10 mg each morning and night) and I hardly ever cough anymore. That is an “off-label” use for that drug… Read more

I was diagnosed with IPF over three years ago now but I can still remember going home stunned by the news I had received. Especially after doing some research on the Internet  about it. My doctor told me not to do that but of course, I did. My second visit with my pulmonologist was filled with tons of questions and thankfully, he was… Read more

With respect to the marijuana designations. There are two strains: Indica and Sativa. There is CBD and THC in each but very little THC in the Indica strain and more CBD and I believe the opposite is true for the Sativa, hence the head high with Sativa. Many years ago, I don’t think there was general knowledge of the distinction but as it… Read more

Hi, Charlene. Thanks for your reply. Before I answer your questions, let me say I really enjoy your columns! They are often the exact same as what’s happened to me or they answer questions I have had.

I have only purchased from a physical store – not online. I have not had much nausea since switching to Esbriet from OFEV about seven months ago.… Read more

I have used edibles containing the Indica strain as that is the relaxation and not head high strain. I take about 20 mg in either a sour gummy or chocolate fudge form, about one and a half hours before bed.

Since I take Esbriet for my IPF and I work out with weights twice a week, I need something for pain relief and don’t want to take… Read more