Dr’s don’t talk about things that will make you well or need to see them less.

a concentrator makes oxygen out of the air in the room no gas or chemicals involved, the only somewhat flammable is in the tanks. The problem with tanks is they are heavy and if you are up to 8ltrs they only last 45 min per tank. that’s all about the money, if they made really portable small concentrators that would go up to 8,9,10 ltrs a…

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where do you get them?

before I needed oxygen 24/7 I was told no matter what, I needed it when I sleep because that is when it drops to the lowest level. Even if I didn’t need it the rest of the time, those where the days when I could do stuff and go places, now I am at 81/2 to 9 liters and my concentrator 24/7. If I want to leave the house I have to use tanks but,…

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I tried SDI but because I am already on SS and I am over the limit age I could not get it. so I did short term Disability through the county which helped, but it is limited but by $ not weeks like unemployment .

I had one episode with a rash from sun exposure and was told to stop the medication and take Benadryl until the rash went away and then start the Esbriet regime all over again from 1 3x a day back up to 3 3xa day now I switched to the one combined pill 3 x a day and am very careful in the sun try to remember to put on sun screen, wear a hat … Read more

You should have been warned to stay out of the sun, wear sunscreen on all exposed skin when you go out and supplement with D3 vitamins, as your body needs the D3 that the sun provides.

Not with esbriet but from dehydration.

You must learn to control the anxiety you feel when you think you can not get enough air, the anxiety keeps you from getting the air you need, get a grip acknowledge the facts of this disease and force yourself to focus on something else when you feel the anxiety creeping in. I use audio books to listen to so I can fall asleep, I also do… Read more

That this condition by definition will get worse is a given. IPF, COPD, Emphysema, and as far as I know any lung disease is progressive. You can keep it from rapid progression with medication. Have a frank and honest/discussion with your Pulmonologist so to be upfront with your Fiance. People have lived 11 + years with PF/IPF etc. you can… Read more

I declined the use of OFEV because of the heart risk as heart trouble runs in my family, I take Esbriet and after finding a way to combat the stomach issues which are prevalent with both meds.OFEV and Esbriet, I am doing pretty well going on 5 years. Depression is an issue but I don’t believe it is the medication that is causing it, pretty… Read more

Are you seeing a Pulmonologist or just an MD? Sounds to me you need to be on Oxygen.

Yes I do but, I have always contributed it to allergies, although I have never been diagnosed with allergies. I guess I expect my IPF to progress so I don’t worry about it, nothing much you can do anyway except take your meds.

I do, but I have not read where the Esbriet is the likely cause, I also take thyroid meds which states that itchiness is a side effect, and it IS VERY annoying.

Yes many, 11 years and more. No one knows for sure when they are going to die, try not to put all your energy in feeling bad about the life you have and do the best you can now.

My understanding is the difference between PF and IPF is cause, with IPF the cause is undetermined, but it hardly matters, as far as I know all Pulmonary disease is progressive and eventually will kill you if you don’t die from complication ie, heart attack or other things. The medication available will slow the progression but by definition… Read more

I got too much sun once and had to stop the Esbriett and take sudafed until the rash went away. Then you have to work back up to 3 pills 3x a day.Your Dr. should have made it clear that you need sun screen and to cover all other exposed skin before going out. After a while you get a little less sensitive but, it is the big draw back to… Read more

I have mine done at a lab doesn’t hurt a bit.

There are several vitamins that help me feel better. D3 for sure because of the sensitivity to the sun aspect of Esbriet, Liquid B12 because I am over 50 and the enzyme to absorb at this age is gone, C, CO Q10, zinc, Magnesium, potassium because I have lost my taste for bananas. I concurred the nausea by making sure I swallow the pills with… Read more

I started with the 3 pills 3x a day now on the 1 pill 3x a day no problems that counter the benefit of slower progression of the condition. I had some nausea at first until I figured out how to take the pills with food instead of before or after eating. I get occasional dizziness but always contribute it to dehydration, a little… Read more

My Inogen goes up to 6.

I can not use inhalers they make me feel worse so I don’t use them. The one with Albuterol in perticular bother me the most. One of the pulmonlogist I had once said to use it every day but I go for what mwkes me feel better, and when I have a PFT test I tell them to use the one without the Albuterol.

Esbriet or Prifenidone which is the generic name does keep you out of the sun, but the other OFEV has heart complication as a side effect and I have heart conditions in my family, so I chose not to add to that. They both have some common side effects such as nausea but you can combat that easily by swallowing the pills with food in your mouth… Read more

You need a Pulmonologist.

The fatigue is likely due to the diminished amount of oxygen to your brain seems to me it would help to be on oxygen therapy, I know I need it , It was the first thing I was prescribed especially when I sleep, that is when your blood oxygen levels dip the most. Get an Oximeter and see if your levels are high enough, should be in the high 90’s or better.

I think you are mistaken as to the number of people who have IPF or PF I am told it is wide ranging. Along with COPD. There is a lot of research going on to find a better therapy, but right now the 2 meds that are working well to slow the progression are available, get in touch with Genetech for assistance with the cost and additional info.

Elle, I find your difficulties with your pulmonologist very disturbing. If your IPF is bad you don’t want to live in Florida , too hot,& humid for anyone with lung issues . You need to find some better Dr.’s. People like us need to live at as low an elevation as possible with very moderate weather IE. not too hot , not too cold,. there are… Read more

You need to see a pulmonologist AND A CARDIOLOGIST.

Ask your pulmonologist to put you on Meds to slow the progression. You are not alone.

Darcy: I started upon diagnosis, seems to me the sooner you start slowing down the progression the better. the only tolerance problems I know of have been in regard to nausea, but you can deal with that by taking the pills with food in your mouth before swallowing, works great for me and doesn’t take much food. As far as I know there are… Read more

Terminal. difficult, no fun.

15 yrs wow isn’t that some kind of milestone since they tell you 2 to 4 after diagnosis? What have you been doing to last so long? I don’t think the only 2 meds to slow down progression were available 15 yrs ago. Congrats.

I have been on Esbriet for 5 yrs CVS Specialty pharmacy has me reorder every month to make sure no problems have arisen since my last refill, the Dr. renews the script for 3 Mo’s at a time, never had to re-apply. I have never heard of Express scripts, Genetech is the distributor of Esbriet as far as I know. Look at other post on here… Read more

You should report him or her to an advocate or the AMA. That is totally unacceptable.

My Dr. did for me, I thought because it is a specialty drug it had to be requested from a pulmonologist, there is a program to cover expenses through GENENTECH I thought. 877-436-3683 M thru F 6am to 5pm PT.

The I in IPF stands for a word I can never remember that means unknown cause and all of the Lung function diseases COPD, Emphysema, PF, IPF, are progressive until you die from it. There are side affects of the meds, but they are manageable, nausea being the worst for most people. I found that taking mine at the same time with food keeps it… Read more

A good day would be if my DR. would return my phone calls, If I could accomplish something without having to sit down for a while every few minutes. If I could maintain the feelings I have first thing in the morning before I am forced to get up to pee. While I am laying there I feel absolutely normal, no pain, no breathlessness, no lack of… Read more

Everyone is different, Do the pursed lip breathing exercises to get rid of CO2 build up, the CO2 can cause more breathlessness. Join the 1st class medical forum group lots of good info there.

Of the 2 choices OFEV and Esbriet I choose Esbriet because of the heart complication associated with OFEV, Heart disease runs in my family so I didn’t think OFEV was a good choice for me. Esbriet has complications with sun exposure which is bad enough since I am a sun worshiper, I can deal with sun screen and a hat. Both have stomach… Read more

We all have to die, everyone is different so it is hard to say, all I do know is that when I start to struggle with the idea of smothering I make myself refocus on something else to keep the anxiety at bay, that is the worst feeling in the world to me , I would rather be in pain than to feel what not being able to breathe feels like. The… Read more

Blood oxygen levels drop to there lowest while sleeping so you should always use your oxygen at night or whenever you sleep.

You should ask your Pulmonary Dr. questions about IPF and any lung issues, primary care physicians don’t always know a lot about specific illness issues.

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Try CVS Specialty Pharmacy on line regular pharmacies don’t carry these meds as far as I know.
There are other specialty pharmacies out there Humana has one, probably others do too. Your Pulmonologist can hook you up with a way to get the meds.

I agree, I have often thought about designing my own kitchen even without IPF having cupboards at a better level makes more sense to me, always has.

The only way I have been able to keep the nausea under control is to take the pills in my mouth with the food, taking them before or after doesn’t work as well, but with seems to do the trick. I take 3 pills 3 x day Esbriet.

It no longer matters much as to what caused it, what matters is doing everything to prolong your life if you can remain viable. I chose the Esbriet medication as the other one can exacerbates heart problems and I already have enough of that in my family history, there are side effects of both medications, choose your poison.