Pulmonary Fibrosis News Forums Forums Welcome Lounge Herbal Remedies & IPF

  • ruth-edwards

    Member
    February 28, 2019 at 5:33 pm

    Thanks Steve, I’m going to look into ordering serrapeptase

    Glad to try different suggestions and see if one helps me.

  • Charlene Marshall

    Member
    March 2, 2019 at 8:29 am

    Wonderful Ruth! I got mine on Amazon, wasn’t too expensive and of course delivered right to my door which is perfect for me. Goodluck, and let us know how you make out with it if you don’t mind? Thanks as always @steve-dragoo, for being so attentive and helpful to all the forum members. I so appreciate your contributions 🙂

    Charlene.

  • masonryt

    Member
    September 23, 2021 at 6:58 pm

    hi Charlene: I’m new on here and was recently diagnosed with pulmonary fibrosis with secondary diagnosis of pulmonary hypertension. I’m inquiring if anyone has tried NAC supplement. (N-Acetyl L-Cysteine) to slow the progression of PF? Since diagnosis, I have changed my diet, lost 10 pounds and am waiting for appointment to meet with Pulmonary Fibrosis doctor  at Hershey Medical Center to discuss treatment options and possibly clinical trials. That appointment is in 6 weeks. I have a friend that has been taking NAC for PF  and just wanted to see if anyone had good/bad experience with this supplement. Thanks for any input anyone may have. Dave W

    • steve-dragoo

      Member
      September 23, 2021 at 11:29 pm

      @masonryt

      Hey Dave,

      I’ve been taking NAC 600 MG once in the morning for about 9 months.  It has helped but I need to qualify that and anything I add is subjective.  I had an acute exacerbation a year ago that was extremely serious – still recovering.  I added or increased several other supplements that have helped sustain me.  Also, have other medical issues at 72 and know everyone is different. I try to research and update my knowledge every 6 months or so and feel safe with what I do.

      Spend a little time looking over these great forums and you will find a lot of good useful information.  Welcome into the PF family!

      Stay well,

      Steve

      • masonryt

        Member
        September 24, 2021 at 8:05 pm

         

        Hi Steve: thanks for taking the time to respond to my inquiry about NAC. I have now started taking it 2 times a day. Hopefully this will help me also. I have been reading the PF forum since being diagnosed with Pulmonary Fibrosis. Is there any tips on questions I should ask when I meet with PF doctor next month? I’m thinking asking for a biopsy to confirm this diagnosis. Any suggestions you could help would be great. Thank you for your time and stay safe and well. Dave

      • steve-dragoo

        Member
        September 25, 2021 at 12:36 am

        @masonryt

        Hey Dave,

        With NAC be mindful of the daily dose, it varies on where you look but 1500mg daily is the max dosage and I think that might be too much so watch for any potential side effects.

        Ask to be on the lung transplant list and what that means, ask what clinical trials are available (there are several), ask for esbriet and omeprazole, ask for pulmonary physical therapy, ask if you have or might get PAH and what to do about it now. Also, ask for the doctor to clearly explain the oxygen tests they will run. These should get you some good answers.

        Stay well,

        Steve

    • Charlene Marshall

      Member
      September 26, 2021 at 9:26 am

      @masonryt

      Hi Dave,

      Thanks for joining the PF forums and sharing a bit of your story with us. I haven’t personally been on the NAC supplement for my IPF, but I do know others who have. Thanks @steve-dragoo for commenting and I’d love to hear from others who have personal experience with this. The weight loss, albeit not easy with IPF due the difficulty exercising, will likely be welcomed by your doctor as I know that can help the lungs too. Goodluck with your appointment in 6 weeks and if you think about it, please circle back and let us know how it goes. Welcome again to the forums!
      Char.

       

      • masonryt

        Member
        September 27, 2021 at 6:22 am

        Thanks Charlene for the welcome to forum. It’s interesting to read about people’s experiences with PF and learn we are not alone in this disease.  Many good ideas to think and enact on. Stay safe and well. Dave

  • masonryt

    Member
    September 25, 2021 at 8:08 am

    Hi Steve thanks for the heads up on the NAC supplement. Currently I am taking 600 mg 2 hours after breakfast and 600 mg 2 hours after dinner. I will taper it to 600 mg a day after 2 weeks. What does PAH mean? Thanks for the rest of the tips to ask doctor. I have an interview with Philadelphia Temple University lung transplant center in November. I was looking on this website for highly rated Pulmonary Fibrosis doctors and transplant centers in my area, but could not find the list. My area code is 17201. Any suggestions on where to find them on this website would be helpful. Thanks Steve for your help. Grateful Dave

     

    • steve-dragoo

      Member
      September 25, 2021 at 3:58 pm

      @masonryt

      Hey Dave,

      PAH: Pulmonary Artery Hypertension is a common development for us.   I am in the Philippines and a veteran using that mediocre system so I have no real insight on private sector doctors but there is a top-rated lung hospital in Denver a Jewish hospital whose name I forget. Search it on google might help you.

       

      Stay well,

      Steve

  • masonryt

    Member
    September 26, 2021 at 8:31 am

    Thanks Steve, my secondary diagnosis was Pulmonary Hypertension so it appears I already have it. It was discovered when I had a heart catheterization in July.  The heart catheterization showed no blockage and that is why I followed up with Pulmonary Fibrosis/hypertension doctor. I had been sob since 2018, and CT scan of mild Fibrosis in lungs. My local Pulmonologist “watched” my PFT and CT scans for several years. My symptoms became much worse since receiving the Covid vaccine at end of March. Am now on oxygen at night and portable oxygen prn when active. No problem with sob when resting. Have been eating lung healthy foods, lost 10 pounds so far (goal is 30 pounds); got rid of all the feather pillows and duvet s in the house as I read that “feather duvet lungs” can also contribute to pulmonary fibrosis. Since doing these small changes, have noticed some improvement in my breathing. Hopefully the addition of the NAC will help also. Thanks for letting me vent and keep well and safe. Dave

    • steve-dragoo

      Member
      September 26, 2021 at 10:19 pm

      Dave – diet is key and Omeprozale helps IPF as well because the theory goes ingested stomach gas may  – emphasis – increase some types of scar tissue, rather you have GERD or not. I don’t and it seems to help and every little bit helps.

      Stay well,

      Steve

  • masonryt

    Member
    September 27, 2021 at 6:15 am

    <p style=”text-align: left;”>Hi Steve thanks for the heads up on Omeprazole. I’m already taking Lansoprazole DR capsules 30 mg for GERD.  I think it’s similar to the Omeprazole you mentioned. I may inquire with the doctor about changing. Thanks for your help and stay safe. Dave</p>

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