[Roger]

Hi all,

I have had IPF for around 2.5 years. I’m not currently on oxygen or on any drugs. I just tried to get into some clinical trials in the past month however I got rejected do to being too healthy.

Since then my health has started to deteriorate (heavy coughing, lots of mucus, low grade fever, and now shortness of breath from walking around the house. I believe I having the AE you are discussing. In the last few days I have started on oxygen when I think I need it. Level 3

This came on very fast and hit me hard.

I have contacted pulmonologist.

Before this happened my oxygen saturation was at 62 on my breathing test.

Thoughts

[Roger]

Go out on the internet and ask for all locations that do IPF trials.

Call the location that works for you.

Ask what trials they are doing and that you would be interested in participating in one.

There are currently 4 to 6 different trials now active.

[Roger]

Hi everyone, Im 67, I have had IPF since 2022. I will start that trial mid January.

I’m glad to hear that the side effects are minimal so far. I will keep you updated.

Roger.

[Roger]

All, I finally found a solution to start clearing up my voice issues

Pretizone

I agree that my coughing attacks probably strained my vocal cords.

I also started taking zinc and turmeric.

I also use zertec and Pepcid

[Roger]

I was diagnosed with IPF 1 year ago. I also have a lot of mucus and recently have lost

Most of my voice. It’s now approaching 3 weeks. I also have a couple of coughing attacks per day then I feel fine. I wonder if the coughing has done some damage.

I have been on antibiotics for the past 12 days. Overall I feel pretty good except talking tires me out.

I’m not on oxygen and any lung drugs.

Has anyone experienced the voice problem?

[Roger]

Tammy,
Are you taking any meds for IPF or the coughing?

[Roger]

Hi Joyce, sorry you are having mucus issues.
Yes, I have the same, a mucus coughing attack once
Or twice a day. Once I get it out I’m much better the rest of the day.
For me, I find that certain foods or drinks seem to help trigger the reaction or increases the mucus.
Try to control those foods and it improves some.

[Roger]

I got diagnosed October of 2022. I’m 66 also but I’m considering the transplant when it’s time. I’m not currently taking either of the two drugs and I’m stable over the past year. I have oxygen available but not currently using it.
I am exercising 5 times per week on a treadmill and bike. (45 minutes)
I really do think the exercise is helping to keep my lungs maintained.

Roger

[Roger]

Harold,
Congrats, enjoy those healthy years ahead with your family and friends.

[Roger]

Try taking mucinex or a sinus medicine to help dry up the mucus. If it’s one tablet per day then take 2
For the first week to see any results.
It has help me.
Exercise the lungs is the other. (Walking)
It will loosen it up even more.
Roger