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…[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 find…[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 hard…[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 IPF,…[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 Esbriett,…[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 food.…[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 diarrhea…[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 at…[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.