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    • #17950

      Among the many reasons I find this forum so beneficial is the sharing of information for those of us living with pulmonary fibrosis (PF). Occasionally members forward newsletters, links, articles or research advancements my way in the hopes that I will share it with others in our forums community. I am always happy to do this, as I believe the more information we have as patients, the better. I also am cautious about ensuring I/we (BioNews) don’t endorse any alternative therapies, as we’re not healthcare professionals and share information on this site merely for informational purposes.

      I cannot speak personally to the benefits of WEI products and herbal medicine, but I know some members of our forums can. Therefore, I am happy to share a newsletter recently shared with me about these products, in case it helps others or they’re interested in learning more about it.

      To sign up for the monthly Wei Products newsletter, follow THIS LINK and scroll down to the bottom of the page. Again, I am sharing this merely for informational purposes; I cannot and do not endorse this product. 

      Thank you to our forums member who shared this with me, and all of you who continue to use the PF News forums as a platform to help others obtain pertinent information about their disease.

      Charlene.

    • #17953
      Peter Goodwin
      Participant

      I clicked on the link for IPF and found the following:

      Intensive research has been conducted to find what causes IPF. It has been found that IPF is strongly associated with gastroesophageal reflux disease (GERD), a condition where stomach acid flows back into the esophagus. It’s estimated that 90 percent of people with IPF have GERD. There are many theories about the connection of IPF with GERD and researchers are investigating whether aspiration of stomach acid is the cause of IPF or it causes the acute episodes and worsening of the lung scarring. Recent studies have found that treating people who have IPF for GERD is beneficial. 

      A 2011 study found that people with IPF who used GERD medication had median survival rates about twice as long as those patients who didn’t use the medication. Also, there was less lung scarring. A small 2013 study of patients with IPF found that those taking GERD medication had a slower decline in their breathing capability and fewer acute episodes and the authors suggest that GERD is a contributing factor in IPF.

      Anybody else take medication for GERD?

      • This reply was modified 2 years, 6 months ago by Peter Goodwin.
      • This reply was modified 2 years, 6 months ago by Charlene Marshall. Reason: formatting
      • #17964

        Hi Peter,

        Thanks for bringing up this topic – it is usually a popular one on the forums! I have indeed heard of many folks who have IPF and struggle with GERD/acid reflux unfortunately. It is hard not to be skeptical about the direct link, and I know more information about this is regularly being investigated as you highlighted above. I don’t know about those taking medication for GERD, but I know lots of people on the forums do have experience with both or have even been told that their IPF is directly linked to GERD. Do you take medication for it Peter?

        Great questions, I’d like to hear from others more about this too… I don’t think it effects me at all, I don’t believe I’ve ever dealt with acid reflux issues, but I’m not sure, maybe I have and just didn’t know it? Thanks again for sharing.

        Charlene.

        • #17997
          Steve Dragoo
          Participant

          @petergoodwin

          Hi Peter – my pulmonologist wanted to put me on a GERD med but it is a proton pump and I don’ think it beneficial long-term to other significant issues such as digestion – BUT I am NO expert.

          I rarely have indigestion issues but that may not be a good measuring stick for GERD. I did buy a compromise to antacids and proton pump meds: Tagamet and it does work if I need it. So I am wondering if WEI is really promoting the herbal concoction because it helps GERD?

          Thanks, man – Steve

    • #17971
      Peter Goodwin
      Participant

      Hi Charlene

      Yes. I take Silicolgel which coats your digestive system with a protective coating and helps keeps it under control. I stay away from PPI’s as they have a bad press. It’s a German product. You may have to buy from Amazon in the US.

      Pleased to hear you don’t suffer from GERD. That’s one thing you can do without.

      Peter

       

      • #18000

        Hi Peter,

        Thanks so much for getting back to me – interesting, I’ve never heard of Silicolgel. Was this something your doctor recommended to coat your stomach against the effects of GERD? I’m curious if anyone else is on this: if you have experience with Silicolgel and are reading this forum topic, please do let us know. I hope this is effective for you in reducing the GERD symptoms! I have colleagues with it and it sounds very unpleasant, so I too am glad I don’t have to deal with it. Thanks for your kind words.

        Wishing you well!
        Charlene

         

    • #17972
      Robert McGrath
      Participant

      My understanding is the GERD in IOC patients forms or occurs secondary to the disease. As our bodies struggle for more air our esophagus actually expands as a compensating measure. This larger esophagus affects the sphincter (?) muscle between stomach and esophagus leading to “leakage” or GERD. My surgeon ( I developed lung cancer twice after if diagnosis) showed me mri images from 2012. Through 2018 and even a layman can see the changes in size. I treat the GERD because I have no interest in developing esophageal cancer.

    • #18002

      Hi Robert,

      Thanks for contributing to this topic thread, I’d not heard of GERD as a secondary disease to IPF but certainly am no physician. Many people have shared on the forum that they believe their IPF developed as a result of the acid reflux, so almost as though IPF was secondary to the GERD. I wonder if anyone truly knows, with certainty, which disease precedes the other? Sounds like your physician is very thorough and has a point about it developing secondary to IPF, especially if there are the anatomical changes he has witnessed/shown you. Wow! Hope your treatment of the GERD is effective. What do you use to manage this Robert?

      Thanks again for connecting,
      Charlene.

    • #18006
      Ron Johnson
      Participant

      I was taking Nexium for GERD, then after heart bypass was moved to Famotadine (OTC is Pepcid at 10mg vs prescription at 20 mg). My pulmonologist does not recommend proton pump type meds for this condition. I continue to have stomach issues, but they are likely caused by the OFEV I now take. I am moving from 150 mg to 100mg to see if that helps.

    • #18027

      Hi Ron,

      Thanks so much for getting in touch and sharing your experience with GERD management/treatment. I’ve heard of lots of folks using Nexium to manage this, but Famotadine is new to me. Do you find it helpful/effective? I hope so, I’ve heard from so many people just how unpleasant the symptoms of GERD can be. My colleague was just diagnosed and she is having a tough time with this…

      I hope the reduction of OFEV is helpful too. I am still on the 150 mg, but have heard of a lot of people needing to reduce their dose to 100mg with success. Please do keep us posted on how this dose reduction goes for you, I hope it is helpful. Take care and as always, thanks so much for writing. Its great to hear from you!

      Charlene.

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