May Mya Win

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. I…[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 use…[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 oxygen…[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 in…[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 to…[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 was…[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 were…[Read more]