Dear Charlene and John,

In desperation, I got some friends who went to China to get Breathemax.
I emphasized N115 and sodium pyruvate. 3groups- All drew blank.

Breathe max is available but it is antihistamine and steroids for sinusitis and rhinitis. No mention of sodium pyruvate or N115. Definitely not for us.
I continue to wait and search.… Read more

Dear Charlene,
I will certainly let everyone know when I get it and the results as well.
With warmest regards,
May Mya Win

Dear Charlene,

I have followed the link provided by John Styles
and I am also interested in the sodium pyruvate inhaler.

My PFT has steadily declined since IPF was diagnosed.
I feel quite breathless on effort ao that I have to use my portable oxygen concentrator when I do my chores.
If the claim about sodium pyruvate is true, I would like to… Read more

Dear Charlene,

I changed from Ofev to Esbriet because I could not tolerate the Ofev.
I have been on the maximum dose of Esbriet now for 9 months.

When I saw my doctor in early August this year, my function test was almost the same but the gas exchange DLCO was down from 45% to 39%. There was more fibrosis on X-ray This was reflected in my… Read more

Dear Charlene

Respiratory tract infection is bad news.

It is indeed true about diet. I was not having a good appetite and the result was that I developed a chest infection and I am now on antibiotic injections.

A friend pointed out to me that having to avoid the sun because of the fear of photosensitivity reactions could make me deficient… Read more

Dear Megan,

Thank you very much for your advice.

It is indeed true about diet. I was not having a good appetite and the result was that I developed a chest infection and I am now on antibiotic injections.
I am still trying my best to eat more. I look forward to a stronger me.

A full dose of Esbiret did not help in this matter. But I have… Read more

Dear Charlene,

I am grateful for Megan’s candid account of her dad’s last days.
At least he lived longer than the given 3-5years. Thanks to Megan largely.

I am in the 2nd year post-diagnosis now and although I know that the course is progressive deterioration, I have put myself on ‘survival mode’. Struggle I must.

I want to know whether he… Read more

Dear Charlene.

I was diagnosed as having PF for about a year.

Antifibrotic agents were withheld initially because my doctor suspected autoimmune disease. Other medications were tried first.

My condition deteriorated – respiratory tract infections contributed to this.

50%of my lungs were gone from the initial 69%reduction. Antifibrotics… Read more