Christine McCann

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.

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…[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 only…[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 for…[Read more]

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