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I was looking at my google news and the news published about N115 Emphy Corp new drug from Pulmonary Fibrosis news is really encouraging. In fact it is so encouraging I am thinking of buying some Sodium Puruvate and making my own nasal spray. According to the news release on Pulmonary News this new over the counter drug being developed and currently used in China that the FEVand FVC raised after 8 days use from 52% to 86% and the DLCO alos raised significantly.
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Hi John,
Thanks for writing, it’s nice to hear from you 🙂
I’ve never heard of this before, but will check out the link you shared. I am always cautious about putting new things into my body, especially without credible evidence to back it up but I sure like those reported lung function improvement numbers! Let us know if you find anything helpful in your investigation about making the nasal spray or @kristina, if you can find it online.
Kind regards,
Charlene. -
Hi Charlene. Crazy info but positive. I got the news on this nasal spray from this web site ( Pulmonary Fibrosis news ) press release picked up on google news. Seems this is a non drug, non steroid, actually Sodium Pyruvate is a salt. Really encouraging report from China. Now I need to figure out how to get it or make it. I looked into air fair to Shanghai and its $750 round trip coach and a 22 hour flight. Got to be an easier way.
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I sure hope it is as positive as it sounds John, would be amazing for all of us suffering with this disease! I wonder if there is an option to ship it to the US as opposed to travelling to get it? I like that, as you say, it isn’t a drug or steroid, it is essentially just salt which is more natural so I don’t worry as much about its toxicity. Keep us posted on your efforts to get ahold of it. I know Kristina was looking to see if it could be shipped as well.
Cheers,
Charlene. -
John, I saw my pulmonologist yesterday and asked him about this. He’s at National Jewish Health and is very active in various research activities. He had never heard of it. He went to the link you gave us and said he will look into it but from his brief reading suggested it sounds more like an emphysema process rather than something for IPFers. If/when he gets back to me, I can post his remarks. He also checked another site where studies are listed and he didn’t see it there either.
I would not do anything quite yet if I were you. Of course you can do whatever you want but I trust my doctor more than what I read on the internet. Just be cautious. I wouldn’t want you to cause yourself harm while trying something new but unproven.
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That would be really great Suzanne, if you could share your doctor’s thoughts on it. I know we’re all so eager to have something help with this cruel disease, and investigating it is one measure (educating yourself, researching etc), however, I’m always curious to hear a doctor’s thoughts before trying something for myself. We wouldn’t want anything to harm us or work in opposition of what it claims. I’d love to hear back on what your doctor thinks, thanks in advance for sharing that!
Charlene. -
I met with my pulmonologist yesterday and asked him again about this. His reading showed him that obstructive lung diseases, e.g. COPD may benefit but he does not recommend it for restrictive diseases, e.g. IPF.
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Interesting information, thank you for sharing Suzanne! Always important to consider medical advice when it comes to alternative-type therapies, even if a patient decides to pursue something, it helps to make an informed decision. Thanks for getting back to us regarding this and letting us know what your physician said.
Kind regards,
Charlene.
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I would urge CAUTION. Things that sound too good to be true (50% improvement in lung function parameters in one day) usually are NOT true…and how much I hope to be wrong.
Rene
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Hi Rene,
Awesome to hear from you! Yes, I tend to agree about things that sound too good to be true, usually are. While I want to believe in the benefit of this, I remain a bit skeptical, though am not opposed to doing some research and talking to some physicians to obtain their thoughts. However, I’m not sure I’d be comfortable purchasing it yet without the investigative pieces. I really appreciate John looking into this, and seeing what he can find so that folks can proceed with an informed decision.
Take care – always nice to connect 🙂
Charlene.
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The report at https://www.emphycorp.com/pulmonary-fibrosis-treatment
does not seem to indicate that it slows progression of pulmonary fibrosis but that it improves symptoms, correct me if I am wrong.
looks like you can buy it on Amazon for $10.00.
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It is available on Amazon, no reference to slowing any disease just improving breathing with most people and some coming off of oxygen. Phase one and phase 2 are published with the government trial sites but can be hard to find, phase 3 should be posted soon. The leading word is COPD and then it references Pulmonary Fibrosis, seems it works on all lung diseases with little side effects. The company that has the patent got is licensed in China and it has been used on 2 million people. The push to bring it to market is not there yet, the corporation that has the rights is looking to license the drug, same as they did in China. Seems sodium Pyruvate was used in nebulizers with positive results. So its wait and see if we are alive when it comes to market or a vacation in Shanghai or shop on Amazon.
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That has been my concern is how much to use in a nebulizer, there is some reference on the internet in how much they used. I have not started the sodium pyruvate. I was going to start if my pft results showed I was deteriorating but so far I am steady, had my 6 month pft test yesterday and posted under ” laser therapy results”.
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SP has a lot of different uses for energy, cancer, cataracts for example but unknown results for IPF. On Amazon I bought clear lung a year ago and also started astragalus, still taking the astragalus – and have added a bunch of other things since then too.
So it will be interesting for us all to see results and future articles regards SP and the general public becoming more aware of ILD/IPF.
In the meantime, I take, astragalus, serrapeptase, nattokinase, B complex, D3 with K2, lemon juice, some exercise, plenty of water, class 4 laser – if available, and Wei products when needed. Holding steady, feeling good.
Now, where is that chocolate ice cream and cake??? Steve
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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
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Hi May Mya,
Thanks so much for writing – the topic of sodium pyruvate is an interesting one, although sadly not something I know a lot about. I did read Suzanne’s post with interest though, as her physician said it is likely something to be effective for COPD but not necessarily restrictive lung diseases like IPF. That said, I can understand folks wanting to try it and see if it helps…
I don’t know if anyone has been successful in obtaining it, but there have been a number of people discussing where you can get it on previous forum threads.
I also have to use my POC often when I exert myself or am doing chores, can be tough huh? Let me know if you do try the SP and whether or not it helps you.
Cheers,
Charlene
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Hi May Maya, I have found the breathmax https://www.chinahao.com/product/563790164060/
Do not know if this is the same as what emphy corp claims is their new drug for copd, pulmonary fibrosis but it seems to be what they are selling in China. This drug talks about sinusitis. Emphy corp is keeping their info real confidential, they finished trial 1 and 2 but did not publish the results and said they have finished trial 3 and asked for approval.
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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 -
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