[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 will let you know if I find anything.

Emphy corp USA is now the best bet.

With warm regards,
May Mya Win

[May Mya Win]

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

[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 it.

I would like to use it as an add on to my current antifibrotic therapy. I may then be able to do without my portable oxygen concentrator.

May Mya Win

[May Mya Win]

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 concentrations. There was a drop of 1% then and a further drop by another 2% within these past few weeks.

The doctor explained that different people behave differently and there are periods of plateauing off and periods of decline.

It was interesting to read Taleena Koch post. I gained much information about variability in the pulse oximeter reading in each of them.

I am not eligible for a lung transplant.
In the absence of a medication that cures. I have had very little response to the antifibrotics, I am hoping for a medication that will improve my well being and pulmonary function and subsequently prolong my life.

The post about Emphy clear N115 and the good results are encouraging and I am eager to try it.
Has anyone used it? Where can it be obtained?
Where is it available?
Can anyone help?

May Mya Win

[May Mya Win]

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 Vitamin D and impair my resistance. So I am taking vitamin D supplements. Hope it helps

I am on a full dose of Esbiret. I have to take it as I have no option.

Thank you for your concern,
May

[May Mya Win]

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 take it as I have no option.

Your desire to help people like us is commendable.
You have a Mega Big Heart.

Thank you,
May

[May Mya Win]

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 on antifibrotics and whether it helped at all.

I don’t know how it will end for me. At least I know one of the possibilities. I don’t know whether there will be someone as caring as Megan with me in my last days.

I am extremely sorry for Megan’s loss but at least she should be satisfied with her contribution towards his comfort. I am sure he appreciated it.

May Mya Win

[May Mya Win]

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 now a must.

I was given a choice -and I chose Ofev because of the simple dosing. But my liver enzymes went off so badly. This improved on stopping the drug. Half the dose was the same story. It was obvious now that my liver was unable to tolerate it.

My doctor started me on the only other option – Esbiret, the side effect also included liver toxicity. I was very wary and afraid.

I have been on it since 5thNov and I am now on the maximum dose of 801mg three times a day. There are no tummy upsets and my liver tests are also normal.

How come this one is tolerated by my liver? Maybe it is a case of ‘one man’s meat is another man’s poison’.

The benefits of this are that I cough less, and the mucous is also less. My oxygen saturation has increased from 95percent to 97percent while I rest. I cannot, however, exert too much because if I do too much too fast,  it drops to 88percent and I am breathless. Exercise is with oxygen.

I hope to improve further as it is early days yet.

The reason of this disclosure is to encourage my comrades who suffer from severe side effects. Take heart- there is an alternative and it may suit you better.

When starting these expensive medicines, just buy the minimum at first. It may not suit you, and the pharmacy most likely will not take the remaining pills back.

Charlene, some of us are so fortunate – the right drug straight away. That is the best but there is an alternative for those who are not as fortunate. I sincerely wish everyone the right choice the first time.

I have benefitted so much from your forum.

May