Tagged: 

Viewing 14 reply threads
  • Author
    Posts
    • #30210
      Brigid Thompson
      Participant

      i have read about this spray which is non-steroidal and can improve lung function and fatigue.  Anyone use it?

    • #30211
      john styles
      Participant

      It is not on the market in USA, it was first tested or developed at New Britton Connecticut and Yale medical dept. Over 2 years ago I posted in this forum under ” Sodium Pyruvate “.

      Empthy corp did license it in China but I was not able to order any from China before covid came around. Their is some on going studys for covid useing this spray. Real exciting when we see a press release, just hope Emphy corp gets their licensing agreement so it can come to market.

    • #30212
      Brigid Thompson
      Participant

      John Styles:  thanks for this reply.  Wonder why it has hit the press in the UK.

    • #30220
      Jennifer
      Participant

      Hello, when we asked my Dad’s doctor about this he said that phase three medicines are not available for prescription. Has anyone else asked their pulmonologist last?
      On Emphycorp website:

      ”t<span lang=”EN-GB”>he Clinical trials with our nasal spray demonstrated a statistically and clinically significant increase FEV-1, SaO2, FVC, FEV-1/FVC ratios (52% to 86%),and  nitric oxide, (needed to increase bronchial dilation and fight infections), and a significant reduction of coughing, nasal erythema and inflammation and congestion, in all patients tested with Idiopathic pulmonary fibrosis.  </span>In all  patients, the test results were compared to their previous three-week screening and baseline data (there current therapies) as the placebo control for each variable including all their lung functions, FEV-1, FVC, PEF, FEV-1/FVC ratios, SaO2, Nitric oxide, coughing rates, nasal inflammation. ”

      https://www.emphycorp.com/pulmonary-fibrosis-treatment

       

      • #30227
        Jennifer
        Participant

        I meant to say has anyone asked their pulmonologist about this?

        • #30232
          Linda Maguire
          Participant

          I did a bit of online research about the N115 spray, as it sounds very promising.  Apparently they have completed Phase III trials & Empthy is looking for a pharmaceutical company to manufacture it.  It will need FDA approval first, so it may be awhile before it is available in the U.S., but if it can improve lung function/breathing & cough it sounds like something to pay attention to, even if it doesn’t alter fibrosis.

    • #30229
      John Oman
      Participant

      N115 / Sodium pyruvate nasal spray. I’m not a Dr. and do not play one on TV. I’m just an IPF patient with limited treatment options like the rest of you. I too find the last phase III trial intriguing. I have not been able to find the nasal spray on the market with or without a prescription. However, sodium pyruvate is available in powder form from a number of sources. I’m considering purchasing the powder form and making my own nasal spray based upon dosage described in the past phase III study. I plan to discus the idea with my pulmonologist on my next visit.

    • #30231
      Phyllis Della-Latta
      Participant

      I would not rush to use the N115 nasal spray until it is FDA approved and there until there are peer reviewed scientific publications to substantiate its claims. I contacted the Pulmonary Fibrosis Foundation team voicing my concerns when the article first appeared in the Oct 11 PF News. A nasal spray that can increase the FEV1/FVC ratio from 52% to 86% by inhalation of sodium pyruvate raises a red flag in my opinion. I await news from the PFF. Proceed with caution.

    • #30248
      Jofac O’Handlin
      Participant

      Hello contributors,

      A hospital (Ashford and St Peters NHS ?) in the south of England is apparantly involved in a trial of N115 for COVID 19 patients. I made an enquiry from the lead doctor, but as of the present I have not received a reply.

      My situation is 8 years from diagnosis, 6 years on OFEV and realise that it may be too late for new therapies to be helpful, but one lives in hope.

      Regards all,

      Joe

    • #30249
      Brian Dickinson
      Participant

      I think either being part of a trial or waiting for testing to be complete is prudent. My pulmonologist told me that before Esbriet/Ofev, doctors prescribed steroids for IPF. They discovered later that steroids actually made the IPF worse. Just like with COVID, it seems the medical community learns more as time progresses and therapy/regimens can change as further understanding is gained.

    • #30250
      Jofac O’Handlin
      Participant

      Hi Brian,

      In principle I agree with you, but when you feel that time is running out, straws start to look very attractive!  There have been so many miricals in the treatment of cancer in the last decade, one feels that there will be a breakthough in the treatment of IPF soon. But how soon?

      Cheers (keep smiling), Joe

    • #30253
      sally williams
      Participant
      1. In a Phase III Clinical Trial with patients with Pulmonary Fibrosis, there was a statistically and clinically significant improvement in all lung functions, compared to baseline, including an increase in FEV-1, SaO, FVC, FEV-1/FVC ratios (from 52% to 86%) and a reduction in coughing and fatigue.

      Very exciting results, I believe they are now looking for a drug company to manufacture the spray…so hopeful❤️

    • #30266
      Barb Kuester
      Participant

      I just saw my pulmonologist on Wednesday and he knew nothing about N115. It makes me wonder how closely our US doctors are following research for things like N115.

    • #30276
      Jennifer
      Participant

      I am wondering if Emphycorp could or would request fast track designation by the FDA?

    • #30350
      randy walker
      Participant

      I don’t see Emphy Corp making the same claims that the News does about N115 helping IPF.  N115 sounds like a bronchial diolator for inflamation. IFP permanently scars the diffusing membrane that exchanges gases (O2 & CO2) in/out of the blood that allows us to breath. How can a nasal spray fix that scarring? Does it regenerate lung/cell tissue? I don’t think so.

      OFEV, which at best only slows progressive scarring, costs $11,550 a month, if had to pay out of pocket. Yet N115 which sells under the brand name BreatheMax in China, sells over the counter. Really? Only a few dollars over the counter to fix your fibrosis. If it sounds too good to be true, maybe it is.

    • #30356

      I don’t think the maker or the article reported by pulmonary fibrosis news is claiming that n115 is curative in any way.

      Rather the claim is symptom relief without improving the underlying disease process. So no one should expect any extended lifespan, that best and improved quality of life while going through the course of the disease.

      To me that leaves the question of what are the possible downsides, i.e., could the use be harmful to patients.

      At this phase of my disease, if it doesn’t seem like it might shorten my remaining lifespan I might risk some non-lethal side effects.

      So I concur with another poster that if justified by the evidence steps should be taken to seek fast track FDA clearance for use on a provisional basis or for compassionate or “right to try” use.

       

       

    • #30357

      Another symptomatic (as opposed to curative) approach I’m considering is Inogen’s relatively new TAV (Tidal Assist Ventilation) device which purports to deliver more oxygen to the lungs per liter of supplemental oxygen.

      Again, this wouldn’t make you live any longer but maybe does have some promise of helping you live better while you are still around.

      Has anyone tried this?

      Description and discussion (from vendor)

      Fairly extensive:

      https://www.inogen.com/blog/what-is-tav/

      Includes short reference list

      – – – –

      Portable system:

      Description and brief report of clinical study

      https://www.inogen.com/product/inogen-tav-tidal-assist-ventilator-for-use-with-portable-refillable-oxygen-tanks/

      – – – –

      Home concentrator system:

      Description and same brief report of clinical study

      https://www.inogen.com/product/inogen-tav-tidal-assist-ventilator-with-nidek-5-stationary-oxygen-concentrator-for-home-use/

      $1599 – System for use with portable tanks (fairly frequent special cannula replacement

      $2848 – Use with home compressor (includes 5L compressor)

      (fairly frequent special cannula replacement)

      • #30361
        John Oman
        Participant

        I’ve been using the Inogen TAV with my oxygen tanks for over a year. I find it very useful for my purposes. However, my need and purpose may differ dramatically from yours. I do not use supplemental oxygen except during physical exertion. I classify physical exertion as anything more strenuous than a leisurely walk on flat ground. I do not use it to go shopping (though I do get a store shopping cart and it tends to make walking easier). Nor do I use it climb a single story of stairs.

        To walk at normal rate on flat ground (and keep up with wife and kid), I use the TAV at a setting of “1” which I believe is equivalent to about 2 liters per minute (lpm) continuous flow. For a faster (or slightly up hill) cardio walk, I use a setting of “2” which I believe is equivalent to about 4 lpm continuous flow.  For walking up grade or climbing multiple stories of stairs, I use a setting of “3” which I believe is equivalent to about 6 lpm continuous.

        The TAV comes with a special canula that jets higher pressure O2 through a venturi in each nostril. This tends to pull additional air in along with the O2 and, supposedly assists your inhale by putting a little pressure behind it. Hence the name Tidal Assist Valve (or Venturi?).

        What I like most about the TAV:  1) I can put the tank on my back (in a back pack) with the TAV controller unit hanging from a neck pendant on my chest or in a pocket. As my level of exertion and corresponding need for O2 changes, I can simply push the ‘increase’ or ‘decrease’ button without having to stop and access a regulator on top of the tank.  2) It is the most effective, efficient ‘conserving regulator’ on the market (that I know of and I’ve tried quite a few). It provides all of the O2 in a single pulse at the beginning of the inhale. Increasing to the next level increases the duration of the pulse. It does a very good job at stretching the O2 in the tank, a big plus…

        As to the Tidal Assist function provided by the special venturi cannula? For me, I do not sense any benefit from it. I also find it a bit fragile and a bit more difficult to fit correctly in the nose. They are also expensive to replace. So I’ve stopped using their special venturi cannula and use a standard cannula instead.

Viewing 14 reply threads
  • You must be logged in to reply to this topic.

©2021 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account