I had terrible results with Ofev . I finally stopped after deciding that I’d rather have good quality of life during a shorter period of time. I switched to Esbriet a few months later and have had very few issues. It’s been 3.5 years.

The two best known prescriptions cause side effects Esbriet has been gentler for me. I’m 81 years old.…

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To all of us who have ILD or IPF. Every person’s disease is a little different from others.

There is no cure for incurable diseases.

Ofev and Esbriet are meant to slow down the progress of scarring. Other drugs are to deal with ameliorating symptoms.

The only future I allow my self to think about is tomorrow, some days it’s better just to…

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Pulmonary fibrosis does not cause fever. You must contact your pulmonologist. You have an infection somewhere in your body.

Forgot. You can find out how long the Inogen will last. If it’s not long enough to last through the outing, get an extra battery and don’t push.

It’s better to return home with a little extra oxygen than to run out. You might not be able to get home otherwise. You are the captain of your own needs and the ability to plan the now. Don’t worry…

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Hi George,

I was an active person when I was diagnosed with IPF. I had to use oxygen at 2 lpm.s immediately. A year later, an exacerbation pumped me up to 4 lpm. I have a 35 foot tube and do whatever I want in my apartment. For activities out of the apartment I use Inogen. This works well and I’ve used the two for several years.

I’m always…

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I tried Ofev for a year. I was too sick from side effects to continue. I’m now using Esbriet. No problems. Those two meds are the only ones get info from your insurance company.

I think it helps slow progression but it isn’t a cure.

Don’t waste your time on the cause, take care off the now. Oxygen therapy helps tremendously. Don’t be afraid.

M

I don’t have any confidence in my ability to research causes of IPF. My pulmonologist did that when I was diagnosed 4 years ago. I am 81 years old.

I have been on oxygen the whole time.

My medications for other things have not changed. I jut have IPF.

I don’t think the cause matters at this point. I eat well, don’t drink, exercise…

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All of the POCs are pretty good quality. I don’t suggest getting one until you need it. They get the machines to you in a few days. There are few continuous flow POCs and they are a bit bulky. Inogen is advertised on TV the other brands are not.

I’ve been using another brand for three years. Don’t hurry too much.

This disease moves slowly. No…

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Ofev made me very sick and I had excellent support. I would not allow myself to continue a medicine that they thought might help. Several nurses and an Ofev rep suggested peanut butter. Result: I get nauseous from just smelling peanuts. My Dr switched me to pirfenidone, generic for Esbriet.. my symptoms are so much better.

If you have a hard…

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We have a serious , progressive, and incurable disease. Please live your life right now. Do not waste your time alive by trying to control your death circumstances. If you have a caretaker, let them take care of you. You are unique. LIVE YOUR OWN LIFE NOW.

Few people mention the more tolerable Esbriet. It is an antifibrotic just like Ofev. It’s now generic. Its generic name is pirfenidone and my insurance includes it as a generic like all the others.

The OTC cost used to be $70000 a month. My insurance covered that but I still had a high copay.

It is very effective, fewer side effects, now with a…

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I am 81 years old and have had IPF for 3 years. It is severe and I have access to a good pulmonologist. There are two meds available but they don’t address symptoms. I have had to use supplemental oxygen since the diagnosis

There is nothing bad about using oxygen you will feel so much better when you are using it. You have to get used to it…

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Hello Pops. The only person to be your advocate is yourself.

Esbriet and Ofev are specific for Idiopathic PF. I don’t know what your diagnosis was.

My pulmonologist ran a good half dozen blood tests to rule out other causes. I also took the complete pulmonary function test, had a chest X-ray, and an HRCT. There was no question about the…

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My diagnosis is IPF. It means the cause is unknown. I don’t know what my life expectancy is but I do want to live it with what ever it takes to feel close to normal. I’m on oxygen and am duty years old. If you have a caretaker you are blessed b

I live alone and don’t have a caretaker. I see my pulmonologist every three months and my internist…

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It seems that many would like to avoid the doctor and take the advice of strangers.

That said, you need an Oximeter. Get it at the drugstore. If you go below 90, rest.

There’s nothing shameful about using oxygen. No worse than glasses or hearing aids.

You need it especially when you are not at rest. Find a portable source of oxygen. Use it. The…

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Hi scared and confused.

This a a scary diagnosis. At first I thought the pulmonologist just didn’t really care. Unfortunately, there isn’t very much that they can do. The two antifibrotics May help slow down the progression.
I’ve had two years since the diagnosis and am on 4 lpm oxygen 24/7. I can still do a lot of things that I want to. I… Read more

My Doctor has told me that if I want to use supplements recommended by individuals on the internet, I need to decide whether to depend on their advice or his.

End of…..

Hi Laurie,

The 2-5 year life expectancy was the fore the antifibrotics were available.
They help slow progressing some.

Wait until you see a pulmonologist before making any decisions.

As everyone has said, take care of diet and exercise. More exercise than the recommended 30 min. Per day won’t make any difference.

PF is a chronic,… Read more

Improved spirometer y values mean that you were breathing better the day you took the test. It does not mean that your disease has improved. The good news would be that it

Yes, TLC AND FVC May fluctuate but scans and X-rays tell the real story. Keep seeing your pulmonologist so that if you have an emergency you know who to call.

I’m a doctor… Read more

Hello all.
There is no shame in needing and using oxygen. If your doctor says you need it at 2lpm, why aren’t you doing that?
You will consistently feel better, you’ll be keeping your heart strong, and your judgement will not be impaired because of poor oxygen supply.
With a POC you usually need one setting higher. I carry mine by hand but… Read more

Hello all.
Most of us are patients. We can only relate our own experiences.

Those in this discussion do not mention contacting their pulmonologist. Why would I trust my health to other patients, oxygen equipment sales people, or internet websites.

This is a serious disease. No one knows my personal history and disease information than… Read more

Pulmonary Fibrosis is incurable and progressive. It can be aggravated by environmental issues such as smoke, allergies, chemicals. The progression may be fast or slow. It doesn’t go away. Supplemental oxygen may be needed.
I can’t tell of your GP is being dishonest or just doesn’t know about PF.

Ask for a a pulmonologist referral.

Meredith

Weight management usually depends on my attitude and my prescription meds. I have severe IPF and immediately began Ofev. My doctor perceived little difference between the two but felt the company patient rep was helpful. I was very sick nausea, vomiting, diarrhea for months. My weight did not change. I changed to Esbriet and had few… Read more

First of all you will never read about someone’s end of life experience. For all we know it was peaceful.
I try to stay in the day and I can plan for tomorrow only to the extent that I know I can change my plans if I want to.
It would not be helpful to know. Intellectual knowledge may make you always miserable.
You’ll be cared for.
Accept… Read more

I also reacted to a brief time in the sun. I used sunscreen on my face an neck and the rest of my body was covered. It was very hot that day. When I got home there was a rash on my face and by evening I was itching all over. Next day was fine. Now I stay out of the sun. An umbrella is helpful.

We have to make hard choices with our disease.… Read more

Two tasks a day keep the doctor away.

I get overwhelmed and too tired with more. If I only stop when I feel tired I end up with achy muscles and cognitive difficulties.

Two days of rest for each day of letting myself overdo it

Meredith

It sounds like oxygen therapy can treat the breathing issues. I dint want it but boy, do I feel better with it

OFEV and ESBRIET are supposedly only for IPF not all PF. I have had IPF for two years and had a numbers of tests to determine the cause. None was found.

At that time all test results had to be sent to drug manufacturers and my insurance company to prove my eligibility.

They appear to be helping. At least I certainly feel better and am… Read more

Truthfully no one is going to be able to tell you that they lived 7 years with PF and then died. We only have the day we are living in.

The trick is not allowing yourself to compare your case to others. Every person is different. The amount of oxygen, hours used, test numbers, hours spent walking don’t really help you.

Be reasonable, do what… Read more

This long series of messages were not really about PF symptoms of coughing, sneezing, breathing problems. They seemed to be about weather, vacationing, accidents, and food.

Codeine has been a known cough suppressant for decades. Hydrocodone is a synthetic codeine. Both are schedule 2 controlled substances. Perhaps not in cough syrup. It can… Read more

I am an old lady,79, who had radiation and chemotherapy for breast cancer 30 years ago. It may have caused my IPF. A lot of things may have caused it. It doesn’t matter now. What matters is that we must concentrate on feeling pretty good each day as it comes.
If you have IPF you’re not seeing an oncologist anymore.
Listen to your… Read more