[Christine McCann]

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 .

[Christine McCann]

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 etc. Also supplement with D3 vitamins. very important, why that is not made a priority through the pulmonologists I will never know.

[Christine McCann]

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.

[Christine McCann]

Not with esbriet but from dehydration.

[Christine McCann]

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 breathing exercises (pursed lip breathing helps me a lot) I force myself to calm down. sign up on your computer or what ever you use for “1st class medical thrive” it is a site for people with pulmonary issue and has many valuable teaching methods for people like us. Also above all you need a different Pulmonologist and to be on Oxygen, there is medication that will slow down the progression of the fibrosis, insist that you get the help that you need, I can’t understand how a Pulmonologist can be so indifferent to your situation your stats are too low when they are in the 80’s . Good luck, don’t give up, you can live more years than you think if you take good care of yourself.

[Christine McCann]

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 find ways to cope, don’t give up.

[Christine McCann]

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

[Christine McCann]

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.

[Christine McCann]

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.

[Christine McCann]

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.

[Christine McCann]

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 IPF, PF, COPD, emphysema, are all progressive. The only so called cure might be a lung transplant. I have never heard of ILD. Doctors tell people that the prognosis is a couple years from diagnosis, but that is not really the case I have been on Esbriet for close to 5 years and not doing too bad at all a little more exercise would help but it is difficult. Your pulmonologist should be much more forthcoming in explaining things to you.

[Christine McCann]

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 Esbriett, the big draw back to OVEF or what ever it is called is heart complications which already runs in my family so I wasn’t going to add to that, they both have stomach irritation to deal with but that can be remedied fairly easily.

[Christine McCann]

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

[Christine McCann]

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 food. I was on the 3×3 day caps but have graduated to the 1×801 pill 3x a day and that is working pretty good.. My appetite has slowed and every once in a while I can’t stand the smell or taste of something (like Bananas) that I ate every day for years. Now the coffee is getting iffy. If I ever take the Esbriet without the food at the same time I get a queezy stomach.

[Christine McCann]

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 diarrhea sometimes but more from what I eat, taking magnesium and zink helps as does c, D3 since I can’t go in the sun, B12 liquid since I am too old to absorb the pill form, I have been hanging in for several years over the prognoses so I guess I will take the small discomforts.

[Christine McCann]

My Inogen goes up to 6.

[Christine McCann]

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.

[Christine McCann]

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 hard not to be depressed when your whole life takes a turn like this. Try to stay focused to keep the anxiety in check and realize that things have changed and you are slower than you used to be and you will find some enjoyment even with the reality of your situation, we may have come over on different ships but we are all in the same boat now, you are not alone.

[Christine McCann]

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 at the same time, I have tried eating something before and or after and it does not work as well for me.

[Christine McCann]

You need a Pulmonologist.

[Christine McCann]

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.

[Christine McCann]

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.

[Christine McCann]

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 med’s that slow down the progression of this disease and a lot of support and info from the providers of Esbriet, CVS specialty pharmacy (not the regular CVS pharmacy) and 1st class medical thrive web sites, there are classes and webinars. Gerd can be one of the causes of IPF, Probiotics are necessary, you can get them over the counter but pick a good one, If you had a good Pulmonologist he/she would be advising you of all of this. Try talking to a CVS specialty Pharmacist or better yet google Esbriet, lots of info there. Make some demands on your Dr. if you can’t ind the results you need. Good luck you don’t need to suffer more than what this condition already brings with it.

[Christine McCann]

You need to see a pulmonologist AND A CARDIOLOGIST.