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    • #20511
      Ruth Edwards
      Participant

      Has anyone or is anyone currently taking NAC supplements and do you find it’s helping?

    • #20517

      Hi Ruth,

      I am tagging @steve-dragoo here to see if he has any thoughts on this. I think he may have spoken to this elsewhere in the forums at length, so I’m sure he will be happy to direct you to where that information has been posted or elaborate on it for you 🙂
      Charlene.

       

    • #20520
      Steve Dragoo
      Participant

      @ruth

      Hi Ruth,

      I have looked at a lot of supplements but not NAC, that I remember anyway. (getting old(er)). Comparing it to Serrapeptase (a proteolytic enzyme) removes mucus, cleans blood, and may help remove scar tissue as it dissolves dead protein (food, pills, scar tissue) and has been used for other areas of the body for the past few decades. I have read several times that lung scar tissue cannot be reversed but not convinced that is completely accurate.

      NAC sounds interesting in the small brief I read and may enhance the serrapeptase impact but serrapeptase must be taken far away from food and pills. NAC is one of the great enzymes that help produce other beneficial antioxidants in our bodies. After I googled it, I found HealthLine mentioning 9 interesting benefits. I am glad you brought this up because it can be added easily to a supplement regimen in lower doses. Others I know are looking at Rosavin that was recently posted as a news item on PF News.

      This is the top reason why PF News is such a helpful gift when we all have eyes on potential aids and share them. I know IPF will have remedies one-day but none of us has time to wait.

      Thanks,

      Steve

    • #20524
      JillT
      Participant

      My personal experience with taking NAC wasn’t very positive – firstly, the smell that emanates from the capsules is revolting and after a few weeks of taking it, one day with almost zero warning it made me violently nauseous and resulted in vomiting. So, the remaining capsules I had went straight in the bin! I also had a non-stop headache while I was taking it. The experiment lasted less than a month for me.

    • #20525
      Steve Dragoo
      Participant

      @jill-tanner.

      Hi Jill,

      What dosage were you taking and were taking NAC with food or other pills?

      Steve

    • #20541
      JillT
      Participant

      The dosage was 600mg 3x day. I think at various times I would have taken it with other pills and sometimes not. Don’t remember anything different about the day that it made me throw up, but it was within about 15 mins of taking it. When I googled for side effects, both the smell and nausea were mentioned so I decided to stop taking it.

       

    • #20543
      Steve Dragoo
      Participant

      @jill-tanner

      I read somewhere max dose recommendation is 1200 mg but I know nothing about NAC and how it is supposed to help IPF improve.  It is an enzyme and many may have plenty or react to it.  Hopefully you will find something to help you. – Steve

    • #20544
      JillT
      Participant

      When I did a bit further research after the throwing up incident, NAC is supposed to be particularly helpful for COPD  and other phlegmy lung conditions.  My experience of IPF is that my cough is primarily dry and unproductive, so it may not be a useful supplement for me anyway.

    • #20557
      Rob
      Participant

      Hello Ruth

      My mother had IPF and she believed NAC helped her.  I also have IPF and was told by a top researcher(Dr David Schwartz- just got a $10 million IPF research grant)that NAC in pill form shown little effect but recommended I inhale the liquid form(Acetycysteine or Mucomyst) by nebulizer.  I had a terrible persistent phlegmy cough that has virtually disappeared in the 2 years I’ve doing this and very little IPF progression(?).  I take Esbriet as well and recently added Serrapeptase.

      Good luck

      Rob

    • #20561
      Anonymous
      Inactive

      I have been taking NAC for about 5 years, since my initial diagnosis. The dosage I am supposed to be taking is 600 mg 3 times as day but I am horrible at  remembering the noon dose so I take 2 600 capsules in the morning and 2 at night.  Sometimes with food sometimes without. Always with other pills and water.
      I don’t object to the smell and it has never made me sick. I have never had a wet cough so I can’t judge by that.  I am not able to tell if there is any effect from the NAC but I will continue to take it just in case it is doing something. My pulmonologist asks me at every visit if I am still taking it.

    • #31792
      DJ
      Participant

      I hear of so many people taking Serapeptase, and many seem to have positive results.  However, I see that this enzyme can CAUSE pneumonia.  I am just wondering how those of you who have tried it feel comfortable taking it?  Is there something else you take to counter the possibility of developing pneumonia?  Thank you!

      • #31800
        Steve Dragoo
        Participant

        @dianaj

        I’ve been taking serrapeptase for 4.5 years and it very quickly helped mucus. There are serious precautions such as NEVER take it within several hours of ANY other pills. Did that once with metformin – wish I hadn’t.  Never take within several hours of eating.  I have increased my dosage several times since I began and never had to worry about pneumonia. But I take several supplements and practice a healthier lifestyle than before the diagnosis.

         

        Hope that helps…

        Steve

    • #31821
      Bob
      Participant

      For supplements please read these articles.                                                                                                          1) From the New England Journal of Medicine. Green Tea extract shown to possible stop and possible reverse the fibrosis process in PF. 600 mg of EGCG for 14 days and then a biopsy was performed on 10 patients at UC San Francisco Medical Center  https://www.nejm.org/doi/10.1056/NEJMc1915189

      I buy green tea extract capsules online that have 325mg of ECGC (the active ingredient) and have no caffeine.

      2). Large doses of VIT D   https://www.sciencedirect.com/science/article/pii/S1567576921008481

      Don’t worry about taking to much Vitamin D. Definitely work with your physician if you have one that will cooperate.

      https://pubmed.ncbi.nlm.nih.gov/30611908/

      3. The following herbal formula is called Fei Fu Kang. I get it from a place in Santa Monica. It is inexpensive. Just google the name and you will find it.

      https://lungdiseasenews.com/2017/06/29/pulmonary-fibrosis-progression-can-be-slowed-by-prm-traditional-chinese-medicine-therapy/ 

      • #32234
        DJ
        Participant

        Thank you.  Do you take Metformin for blood sugar issues or for the fibrosis?  I read that Metformin can actually reverse fibrosis.

    • #31825
      Bob
      Participant

      I should have included this article as well. This is the original study and the one referred to in the New England Journal of Medicine article.                         https://pulmonaryfibrosisnews.com/2020/04/21/green-tea-extract-stops-anti-fibrotic-processes-ipf-small-study-
      <h1 class=”bio-article-content-heading bio-type-display–large”>Green Tea Extract Seen to Stop Fibrotic Processes of IPF in Small Study</h1>

    • #31855
      Rob
      Participant

      Has anyone had experience taking quercitin? Supposed to help immune support, respiratory health and now many people have started taking it that have covid.
      Stay well.
      Rob

      • #31865
        Christie Patient
        Moderator

        Hi Rob, I have never heard of this but a quick search revealed that it is bioavailable in a number of vegetables and, most interestingly, green tea, which a lot of PF patients take as a supplement. There are lots of posts in the forum about green tea extract and supplementation, but of course, ask your doctor before starting any new supplements. Looks like quercetin on its own can cause kidney damage in some people, so good to be aware if you try it out. Let us know if you do, and if you notice a difference in how you feel!

    • #32248
      Millie
      Participant

      My doctor is a pulmonologist and knows nothing about supplements.  He tells me that he is a medical doctor and not into natural medicine.  So, I can’t get any answers from him about supplements for PF.

    • #32251
      Anita C
      Participant

      I took NAC 600mg twice a day for many years. Diagnosed initially in 1995, there was absolutely no established treatment for PF. How does one know if it did/did not help since there was no control group or individual. But I survived 22 years with PF before receiving a transplant. Of course it is impossible to attribute it to NAC (or not) but…I also would not rule it out.

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