I have an Inogen 5 and it works fine while I am sitting or slight activity. On my home concentrator (Millennium 10), I take 6 LPM at rest and much more when active, like showering, etc.

Hi Sue,

I can recommend Premier Protein for its 30g of protein, great taste (chocolate), and relatively low price. I get it delivered from Amazon!

I did not have good luck with either OFEV or Esbriet. Both caused nasty diarrhea and I experienced no betterment in my reduced lung functioning. My doc and I decided to just discontinue those drugs…

Read more

My doc just applied for compassionate use of this drug on my behalf. I am late stage IPF and emphysema. Only cohorts of the previous Phase 3 trial are eligible for the latest one.

Hi Samuel,<div>

First off, I recommend you ask your questions using an AI app, like ChatGPT, Gemini, etc. Some search terms might include:

O2 saturation

Supplemental oxygen

DLCO

Fatigue

I had luck by describing my situation, age, height, weight, gender, date of IPF diagnosis, symptoms, co-morbidities (important), etc. and then asking questions,…

Read more

I have been using AI extensively the past couple months on many subject matters. It has helped me a lot in understanding my complicated health situation. After comparing the results of five AI apps, I now use Gemini (Google) for most questions.

I was diagnosed with CPFE about three years ago. For the past year I’ve been on 6-7L. of O2. I thought I was ready to die last fall, but I’m still here at 77. I was on both therapies for about a year each, but my test numbers kept falling so I quit on doctor’s advice. My last O2 test was a year ago and my DLCO was 31%. I was put in…

Read more

I was diagnosed almost three years ago, but had some symptoms for years before.  I tried OFEV for almost a year, but the side effects (BM) became too much, so I switched to Esbriet, and had no significant side effects. Unfortunately, my IPF progression continued unabated. My pulmonologist said I should consider stopping the meds because they… Read more

Hi Charlene,

I have had similar experiences as you. My BMI hovers around 30 and I think the lack of exercise has something to do with it. Besides the dyspnea I have, I need a complete knee replacement, which severely limits my exercise. Unfortunately, I am past the age for safe major surgery.

I really have not noticed any lack… Read more

Hi Deb,

I am 2.5 years from my diagnosis and have tried both OFEV and Esbriet.  Neither one seemed to slow down my IPF, and OFEV gave me frequent and sudden diarrhea at inopportune times…not much fun!  My pulmonologist recommended I discontinue those drugs as the “benefits” were not offsetting the side effects.  Neither drug affected my… Read more

End of life is absolutely a legitimate topic here.  What is IPF other than a terminal disease?

I am “lucky” to have contracted IPF (and emphysema) in my 70s.  I can say I have lived a long and fulfilling life and the “end” is inevitable for us all.  We just happen to know, roughly, when it will happen.  That knowledge gives us the opportunity… Read more

I have suffered from a hiatal hernia for 30 years.  A daily dose of Prilosec/Omeprazole has controlled it very well.

Tom

Hi Marj,

I wouldn’t be concerned with the increases in this latest PFT.  So many factors can cause this.  Better to monitor changes over many test dates to determine the trends.  I use an Excel spreadsheet to chart all my PFT results over time…really helpful!  I have found my pulse oximeters to be generally unreliable in accurately… Read more

For the sake if my four kids I hope IPF is not genetic.  I was diagnosed less than 24 months ago and despite taking OFEV and Esbriet over the past 19 months, my pulmonologist just yesterday referred me a palliative care doc, saying “we’re at a dead end.”  Although there has been no IPF in my family that I know of, my mother died at 93 of… Read more

I’ve missed a few midday doses, but that’s all.  I have no side effects from the full dose (unlike OFEV).

I’m 74 and was diagnosed two years ago.  My BMI is a bit over 30 and I have been waiting for the reduced appetite to befriend me!  No such luck.  I did lose some weight last year when I was on OFEV (diarrhea), but since I switched to Esbriet I have no diarrhea but also no weight loss, though my legs are thinner than pre-IPF.

Hi Allan,

I’m in about the same condition as you (I think).  We went to London, Paris, Venice, and Rome for two weeks. Flying wasn’t a problem for me, although I requested wheelchair assistance both ways through airports.  We’re going to Hawaii in a few months and I have no concerns unless I suffer a significant decline.  I use an Inogen… Read more

Thank you all for your responses. I’ll do some more digging!

Tom

Hi Christie,

Yes, I had all the heart tests including ECG (EKG), Echo, treadmill, and CT. All checked out fine.

Tom

Hello all,

Long story short, on the advice of my pulmonologist I went to the ER last Friday for a chest CT due to pain (heaviness/pressure) inside my left ribs. After 36 hours and very numerous tests, including two CTs, ECG, treadmill stress test with echocardiogram, xray, blood tests, etc., there was no diagnosis.

This pain or pressure… Read more

Hang in there, Annette…you just might have MANY good years ahead. If the OFEV bothers you (like it did me), try switching to Esbriet. I’ve had zero side effects after three months and my condition has improved.

Enjoy your ski trip!

Tom

Hi Wendy,

So happy that you’re recovering so fast. I was on the downhill until about 6-8 weeks ago when my switch from OFEV to Esbriet took effect. No more nasty side effects and feeling much more like myself.

I hope you continue improving!

Tom

No – Esbriet

I was on Ofev for 12 months.  My IPF got worse, so my doctor agreed to switch me to Esbriet six weeks ago.  No more diarrhea (thank God), and no side effects from the Esbriet, including no nausea.  I’m hoping this trend continues, and that it proves more effective than Ofev.  Good luck to you all!

Tom

Hey Alex,

 

At 74 I tend to bruise pretty easily, but since I started OFEV in January, it’s been ridiculous!  Plus, my skin seems thinner and breaks open frequently…and more bleeding, too.  Not sure if it’s the OFEV or one of my many other medications.

Tom

Hey Alex,

 

At 74 I tend to bruise pretty easily, but since I started OFEV in January, it’s been ridiculous!  Plus, my skin seems thinner and breaks open frequently…and more bleeding, too.  Not sure if it’s the OFEV or one of my many other medications.

UPDATE:  I copied this from the OFEV web site:

“OFEV may increase your chances of… Read more

Got my booster ten days ago…Pfizer.  Zero side effects.  Feeling indestructible (well, almost, except for the IPF!).

Hello Di,

I started 150 mg/day OFEV 4 or 5 months ago.  My only notable side effect is diarrhea, which is “usually” controlled by Loperamide (Imodium).  I’m 73.

Good luck!

Tom

Can’t blame yourself, Kathryn.  It was HIS decision to make, and you already gave him your advice.  Sh#t happens…sometimes you are powerless to affect it.  Very sorry you lost him.