I am in advanced IPF and all of a sudden I have gotten  worse. My breathing is terrible. Is this a phase or am I getting worse in my disease.

Good morning Charlene and I wish you a MERRY CHRISTMAS and a happy and healthy NEW YEAR.  Thank you for all you do on this forum. You are my go to gal.

I have just had a PFT and just did a sleep study with an oxymeter connected to a device to see what my oxy drops to during the night. I cannot walk to the bathroom without my oxy dropping to low 8o. When I am sitting it is usually in the high 90. I am on 5 l  24/7. I feel like I need a higher oxy number and hoping it will make me feel better.… Read more

Has anyone had a good result from their dr after taking the EGCG for several months. I called the Teavigo company and a young man there recommended Healthy Origins teavigo. I am taking that, so we will see.

My dr wants me to keep my o above 90 as well Charlene. When I am exerting myself it drops to the low 80’s so she has me bump it up another number. I am having as issue with a runny nose since I am on o pretty much 24/7. Anyone else having this issue.

Thank you for tips on the runny nose issue. It is driving me nuts. I recently had to buy a new mattress so I bought an electric bed (for down the road, way down I hope) and I am going to try that tonight. God bless us all. Charlene, I hope you are doing better. I have not checked in for awhile.

Happy and Healthy New Year Charlene. Hope you are doing better. I did get the oxygen set up. After having 25 family members here for Christmas with eight of them spending the night I was pretty wore out. The oxygen company called me at 5:00 in the evening saying my Dr just called in my order. He was willing to come over that night. The house was… Read more

I am amazed at the thread about the Apple Watch. I have been planning on getting one but now that I see what a help it will be I am ready to dive into one. Thank you for your caring words in this forum. I have learned so much. I am waiting for a call to set up oxygen therapy for exercise, housework and shopping. Looking forward to feeling… Read more

I went through a program called Open Doors, it is paying full price of my Ofev. I received my meds through Humana. A nurse calls me every month to check on me and they schedule when I want my med delivered. I recently had to go on 100 instead of the 150. The diarrhea was very severe, I am still adjusting to the 100, I hope I can tolerate this one.

I just had my PFT and my diffusion went down by 15%. My dr is concerned because it does not go along with what I am able to do on a daily basis. She is going to retest me thinking it might be technical error. I have not been drinking water and wonder if that had anything to do with my low number.

@mary, @pamsteele, How much biotin are you taking and did your Dr approve it. Thank you

My physician referred me to Open Door. Please check on this. I get my med mailed to me every month. A nurse calls to check on me every month and then she transfers my call so I can set up when I want it delivered. Please check with your Dr about this.

As regard to the Dr prescribing Ofev, my Dr told me the side effects of each and let me choose which one I preferred.

Charlene, I just read a post of yours about taking a stomach coaster before you take your Ofev. I have also having issues and would like to hear more about this stomach coater Thanks

I am on Ofev and am experiencing hair loss. Hope tp get some help with this.

Thank you for your response Paula. I will definitely try the pills right away.  I do take them but am always hoping it is a one time thing and I won’t have any more problems so I  wait, but not any more. 😍

I certainly hope you can get a transplant soon, our neighbor had one for PF and he is doing great. Good luck to you.

Hi Rose, my appetite had dramatically been compromised. I have lost 21 pounds in one year. I am on OFEV but am really dealing with the diarrhea. My Dr has me on one pill for a short time and then try two again soon. I am learning what foods send me running, 😂, and I too am trying smaller meals.

Hi, I am new to this forum. I know I have had IPF for over a year, possibly two years. I was officially diagnosed after a lung biopsy at University of Louisville in Oct 2018. My Dr said my condition is mild to moderate. I am on Ovef  150 but have had to go to one pill a day to give my body a rest. I am doing my best to take two so I can get… Read more