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    • #20921
      john styles
      Participant

      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.

    • #20922
      john styles
      Participant

      This drug finished phase 3 trials but from time of application to get approval is usually 2 1/2 years, I for one do not want to wait that long, I am wondering if we try to make our own or fly to China to purchase this drug?

    • #20923
      Kristina grilo
      Participant

      Can we not order it online from a Chinese pharmacy? I’m going to see if I can…

    • #20924
      john styles
      Participant
    • #20941

      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.

    • #20943
      john styles
      Participant

      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.

       

    • #20944

      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.

    • #20972
      Suzanne R Brennan
      Participant

      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.

      • #20979

        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.

      • #21360
        Suzanne R Brennan
        Participant

        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.

        • #21366

          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.

    • #20975
      Rene Hakkenberg
      Participant

      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

      • #20980

        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.

    • #20992
      ajd
      Participant

      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.

       

       

      • #21000
        Mark Koziol
        Keymaster

        Hello ajd, thank you for the link to the research article. Mark

    • #21002
      john styles
      Participant

      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.

    • #21003
      john styles
      Participant

      As far as the research, it seems it included some respectable institution, Yale University School of medicine and Hospital for special care New Britain Connecticut.

    • #21273
      Dan Devine
      Participant

      Has anyone in this group been successful in obtaining Sodium Pyruvate nasal spray?

    • #21276
      Kristina grilo
      Participant

      I bought some on amazon, but it’s a powder. Now I have to purchase a nebulizer…..not sure if it’s going to work…also I’m a little afraid of trying it, so i have not bought the nebulizer…..yet..

    • #21280
      john styles
      Participant

      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”.

    • #21299
      Steve Dragoo
      Participant

      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

    • #21350
      May Mya Win
      Participant

      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

      • #21378

        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

         

         

    • #21384
      May Mya Win
      Participant

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

    • #21389

      Sounds good, thank you May Mya!
      Hope you stay as well as possible, I think of you often.
      Charlene.

    • #21396
      john styles
      Participant

      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.

    • #21467
      May Mya Win
      Participant

      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

    • #21513

      Hi May Mya,

      Thank you so much for the update – a little disheartening that folks don’t know what it is we’re looking for. Makes me a bit skeptical about its success. Do let me know how your search turns out, and take good care.

      Sincerely,
      Charlene.

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