Just make sure to use an oximeter to check your oxygen level and keep it in the 90’s so you don’t damage your heart or lungs. If you need oxygen it will make you feel so much better to use it before you cause more issues.

Peg

I have IPF, diagnosed 2013 and I was on OFEV from 2017 to 2022. I also have diverticulitis attacks and was not told that you should not take it with that condition. Had a lot of attacks over the years while taking it and in the beginning had to drop from 150 to 100 dose. Still had constant issues. Finally stopped taking OFEV after last…

Read more

I have IPF, diagnosed 2013 and on 4 ltrs oxygen. I have a lot of nasal drip also, and I use the Simply Saline Nasal spray at least once a day. I make sure it runs down my throat to loosen the mucus and wait a few minutes to blow my nose. It brings out all the mucus and stops the cough for most of the day.

About 3 months ago I started…

Read more

POCs are not continuous flow and only go up to 1.5 ltrs. The numbers on the machines do not correspond to liters.

So glad you are adding oxygen sub-forum. I wish we had this 2 1/2 years ago when I first started using oxygen. It would be great if we could use this to give each other hints and help on issues we have with oxygen use. Ideas – your favorite tubing and cannula and where you get them. Supply company you use and is it good or bad. How you…

Read more

Someone in the other group I correspond with just recommended a natural solution – Mullein drops or capsules. I never heard of it so checked it out and it seems to work for a lot of people to clear the mucus out of your throat and chest so that would stop the nasal drip issue. The drops just get put in water to drink, so it is easy to use. …

Read more

I also had diverticulosis when I started taking OFEV over 7 years ago. None of my doctors told me that it was not a good idea to take it with that issue already happening. Changed to the 100 after bowel issues about a year in and that was better, but over the years had several diverticulosis attacks and still doctor never said to stop the…

Read more

Your oxygen requirements may have changed after the exacerbation. You should try turning up your oxygen and see if there is a point where it helps the breathlessness.

After being very sick and put on oxygen 24/7 I’ve had several series of prednisone and antibiotics. Always feel good while on them but not so good when done. Doctor is just putting me on 10mg per day to see if that will maintain feeling good and I’m hoping this works. Good to hear that it’s worked for you.
Peg

I would be interested too.
Peg

I am also 78 and diagnosed in 2013 with IPF.  Started OFEV in 2016 and after lots of reactions now taking 100 mg.  I also started with headaches about 2 years ago.  I previously never got headaches before and tried to decide if it was my glasses needed changing – but that was not the problem.  Tried changing the way I sit and stand thinking it… Read more

I have been taking OFEV for 4 years and also have thinning hair.  It started about 2 years after beginning to take it.  My hairdresser made me aware of the thinning and it has progressed and is very thin on top.  There is no way to make it look good so I’ve started wearing wigs.  I did make the doctor aware of this issue.

I have been taking OFEV for 18 months now and had all of the awful side effects too.  Lost a lot of weight and diarrhea, vomiting and nausea.  I put up with it until a month ago and asked my doctor to change me to the 100 mg pills.  What a difference.  I feel so much better, have gained some weight back and no diarrhea or vomiting.  I still… Read more