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    • #20396
      jaime L manriquez
      Participant

      Living with IPF since 2012 when i was diagnosed, i was in OFEV for a few months and couldn´t keep up with the terrible side effects  My saturation is over 96% resting , but my ordeal is the excess of Phlegm specially at night when I lie down to sleep. If anybody knows something to cut some of that would be great and much appreciated.

    • #20398
      Linda Williams
      Participant

      I just recently started taking Serrapeptase 120,000 spu once a day as I had noted several members on here mentioned taking it.   It handles sinus and nasal congestion for me so much better than Singular or any OTC decongestants I have tried.  I want to thank those who mentioned it on this forum, otherwise I would never have tried it.  I ordered it from Amazon. 90 caps in a bottle. Linda Williams

      • #20443
        Steve Dragoo
        Participant

        @jaimeluciano, @swanlw45

        Hi Jamie and Linda,

        I started taking serrapeptase 8 or 9 months ago after some research and self-testing. It is a big part of my daily regimen. Most of this has been shared elsewhere but it is important to understand a few things about serrapeptase.

        Serrapeptase is measured in SU so be sure you get a pure form. I started at 120,000 SU split into 2 doses and now take 450,000 SU in 2 doses. It is considered safe up to 1,000,000 SU daily with no suggested rest from taking it like some other supplements recommend. I increased the dosage after returning to the Philippines because I have been using laser therapy successfully in the US but there is no class 4 laser here.

        It works fast on phlegm depending on the root cause – starting working on my IPF lung phlegm in 3 days. Today I still have very little lung build-up at all.

        Serrapeptase is a blood cleaner so it may help reduce BP slightly but it is not a blood thinner.  After 8/9 months a side benefit is many of my capillary varicose veins in my feet are gone because of the serra.  I do take several other important supplements but I think serrapeptase is one of the most ones important for us.

        Mayor caution – major – Do not take it anywhere close to other pills, especially time release as it sees them as dead protein and that is what serra dissolves/eats. So the same applies to food as it is dead protein too, generally. I try to avoid food and pills at least 3 hours before/after serra. Since I take one of the doses at 10:30 PM that works for me.

        Hope this helps you.

        Stay well,

        Steve

    • #20403
      jaime L manriquez
      Participant

      Thanks Linda for so prompt reply, will try and see what happens

      with serrapeptase, I heard about it  in this forum, few months ago

      thanks again

    • #20404
      Linda Williams
      Participant

      @jaime,
      You are quite welcome. Hope you find it helpful too. Linda

      • This reply was modified 8 months, 3 weeks ago by Charlene Marshall. Reason: formatting
    • #20407
      Mark Koziol
      Keymaster

      Thank you Linda for offering Jamie suggestions on how to cut his level of phlegm. Mark

    • #20411
      Linda Williams
      Participant

      Mark, I am fairly new at this dx, only 15 months, and look for any suggestions I can do for myself. So am glad to share anything I found helpful. Thank you and Charlene for posting questions and information.  Linda

      • #20414
        Mark Koziol
        Keymaster

        Linda, it is really our forum members who drive these discussions and I am proud to be a part of this group to advocate for our members and the disease we have encountered. We should also remember the most important part of our lives; our caregivers. Thank you Linda for being a vital part of our group. Mark

      • #20427

        Our pleasure Linda, thank you for being such a valuable member of our forums and sharing your experience. We greatly appreciate it.

        Kind regards,
        Charlene.

    • #20415
      Linda Williams
      Participant

      Mark, I am very pleased to be able to be a member and get updates and know how others are managing.  Linda

    • #20418
      Mark Koziol
      Keymaster

      Thank you Linda!

    • #20430
      Karmin. Chowbay
      Participant

      Regarding the phlegm.  I drink a lot of ginger  tea. It’s helps me a lot. It also keeps the lungs healthy.  Hope this is helpful. Jeanie.

      • #20437
        John L
        Participant

        Is there a brand or preference of the ginger tea?   thanks….

      • #20467

        Very helpful Karmin, thank you for sharing! I suspect many members of the forum may try this non-invasive option for helping with phlegm. As John mentioned below, is there any particular brand you drink that helps over another or just a “black/clear” ginger tea?

    • #20449
      Linda Williams
      Participant

      @steve-dragoo ,  thank you so much for the information re Serrapeptase!  I have been taking it in a.m. with my blood pressure pill.  Will change it to mid day when I don’t take other pills nor eat within 3 hrs. I usually eat 2 main meals a day, not 3, as just not hungry.  Thank you again!  Linda Williams

      • This reply was modified 8 months, 3 weeks ago by Charlene Marshall. Reason: tagging
    • #20465
      Steve Dragoo
      Participant

      @swanlw45,

      Hi Linda,

      That is why I brought is up. I take time-release niacin and took it too close to the serrapeptase – wish I hadn’t done that. It could potentially be dangerous that way so do be cautious in taking it by itself well away from food and pills.

      Steve

    • #20472
      Kristina grilo
      Participant

      Steve, how are Wii laboratories herbs working for you?

    • #20474
      Linda Williams
      Participant

      @Steve Dragoo,. From what I read that you wrote I should take Serrapeptase 3 hrs before/after other meds or food. Is that not correct?  Linda Williams

    • #20475
      Steve Dragoo
      Participant

      @kristina,

      Hi – they have helped in this harsh environment in the Philippines but it is difficult to say how much.  I am going to take at least 4 months of pills. Considering there is no laser here, I think they are good. I am also not on any O2 since arriving here 2 months ago but looking for a small concentrator at night to give my lungs and heart a little more rest.  Oximeter has dipped a point but that is not significant as I have not changed anything else I do, actually started walking a little more this past week. Serrapeptase and nattokinase do indeed help also.

      So I believe a great combination would be class 4 laser, Wei for 3-6 months – then occasional maintenance, serrapeptase, and nattokinase. Of course other things greatly can help us too.

      Steve

    • #20480
      jaime L manriquez
      Participant

      Thanks Steve for such a good tipo. ..i Just started on serrapeptase. 3 times a day but only small amount 1 pill 5mg every 8 hours should it be 2 three times a day.  Will increase gradual la

      Best regards

      Jaime

       

       

    • #20482
      Robert Carlson
      Participant

      This note is in response to Jaime’s initial question regarding phlegm.

      I too have been plagued by excessive nasal congestion and viscous phlegm with resultant breathing and coughing problems.  While not a solution, I have found the use of saline nasal rinse very helpful in clearing my nasal cavity and throat of the congestive materials.  I use the rinse solution at bedtime and maybe (3) additional times, as needed, in 24 hours.  I use a two-step procedure; I first apply the rinse to each nostril and follow this by gargling with rinse solution in order to expel the congestive materials.

      A person can save money by making an inexpensive saline rinse solution at home, it is a mixture of common (non-iodized) salt, baking soda, and sterile filtered water.   Add 1/2 teaspoon of a mixture of  (3) parts salt to (1) part baking soda to (8) to (10) ounces of water.

      • #20486
        Steve Dragoo
        Participant

        @jaimeluciano

        Jamie,

        Serrapeptase is a dead protein dissolving enzyme so it is important not to take it around food or pills because it wastes the serra and causes the pills to dissolve faster. For those reasons I take it twice a day about 3.5 hours after breakfast and 10:30 PM. Those are the lessons I have learned in 9 + months.

        I started with 120,000 SU daily because everything I read was clear enough that under 60,000 SU it was not helpful.  Since it is fairly inexpensive, I wanted the maximum safe benefit I can achieve and have increased to 450,000 SU daily.  It has no warning or safety issues with daily doses up to 1,000,000 SU.

        Once you find the dose you prefer, it is stable from then on. I increased the dosage because I was using the class 4 laser successfully but there none here in the Philippines. So I would suggest 2x daily around 60,000 – 80,000 SU far away from any pills or food. Make sure it is nothing but serrapeptase measured in SU.

        Hope that helps.

        Steve

    • #22321
      Reshma Joshi
      Participant

      Hello, I want to know what can an IPF patient do to get rid of coughing? Or at least minimize it? My mom has been taking medicines like Emsolone, Lucast and Lormeg but they are not helping her. Can anyone please suggest anything? Any kind of advice would be a great help.

    • #22322
      jaime L manriquez
      Participant

      Reshma. .i take FLAMEX  with codeine 3 times a day starting at bed time excellent for coughing. .hope this helps

      best regards

    • #22326
      Reshma Joshi
      Participant

      @jaimeluciano

      Thank you for the info Jaime. Are Flamex and codeine different medicines? And do we need prescription from the doctor for these medicines?

    • #22332

      Hi Reshma,

      Thanks for writing about this topic – IPF and coughing is a popular topic among our forums! Sorry to hear your Mom is experiencing this, it is one of the most unpleasant side effects of this horrid lung disease. Unfortunately there isn’t one magical resolution or medication for this, some things tend to help patients whereas others do not. Gabapentin has been something that has been effective for many IPF patients, although it is being newly discovered.

      Feel free to do a search of these forums — in the top right hand corner of the homepage there is a search field. You can type in “IPF and Cough” and you should find a lot of discussions about this topic. Goodluck!
      Charlene.

       

       

    • #22338
      Reshma Joshi
      Participant

      Thank you so much @charlene for the information. I’ll surely do the research on this forum.

    • #22340

      You are most welcome Reshma! There is some really helpful information on here, members are so willing to share which is wonderful. Let us know if you have any other questions 🙂

      Charlene.

    • #22350
      Lorraine
      Participant

      @jaimeluciano

      Hi Jaime:

      A lot of good information and advice on this thread, and I hope it brings positive results.

      I would like to add one other thing. I bought an adjustable bed a couple of years ago, prior to hip replacement surgery and find keeping my head elevated, while sleeping is an effective way to get rid of phlegm. Alternatively, propping your head up with pillows, or a sleeping in a recliner may help, until it clears.

      Best wishes,

      Lorraine

       

       

    • #22356
      Karen Martin
      Participant

      My daughter found an article that said pineapple juice is helpful in cutting the production of phlegm.  It is the bromelain in it that does the job.  It does help me, although I know some people have trouble with stomach issues and the acid involved.  Diabetics would want to factor in the sugar in it.  I hope this might help someone out there.  Karen

    • #22368
      Anne Philiben
      Participant

      I’ve found that sleeping with the humidifier running cuts down on the mucus formation.  My mornings are much better since I started using it.  Also Pineapple juice as Karen Martin suggested.   I continue to rely on robitussin and dextromothorpan…which are the drugs in Mucinex.

    • #22375

      Great share Karen! I wrote about this awhile back, but for newer members it is awesome for them to see again. You’re right: diabetics would need to factor in the sugar, and some people find pineapples too acidic but for those who can have it, what a delicious way to help cut down on the phlegm. When I went to Hawaii this past September, my doctors told me to eat as much fresh pineapple as I could because it is so good for us. I ate so much that I had mouth sores within 24 hours of being in Hawaii…. totally worth it though! Thanks for sharing 🙂
      Char.

    • #22376

      Hi Anne,

      Thanks for sharing – great suggestions for others to try and cut down on the mucus formation. A humidifier is a relatively easy thing for others to try and see if it is effective for them 🙂 Glad it is working for you. Happy New Year!
      Charlene.

    • #22396
      Karen Martin
      Participant

      Charlene, I am glad to hear someone else was helped by pineapple.  Thanks for letting me know.  Karen

    • #22404

      I sure was Karen, it was also delicious in Hawaii! I don’t struggle with any acid issues, so I can eat as much fresh pineapple as I can — looking forward to summer when it is more plentiful, among many other reasons 🙂 Take care.

    • #23098
      Muhammad Akram Ali
      Participant

      From the experience of my IPF forum colleagues, I would like to know what medication can effectively help relieve / curb the fits of cough that are encountered pretty regularly by me.

    • #23102
      Mark Koziol
      Keymaster

      Hello Muhammad, I previously wrote a topic regarding the effectiveness of gabapentin in alleviating chronic coughing. Here is the link.  Mention to your physician, it may be a another possibility for you. Take care, Mark.

      https://pulmonaryfibrosisnews.com/forums/forums/topic/gabapentin-is-a-proven-treatment-for-refractory-chronic-cough/

    • #23691
      Reshma Joshi
      Participant

      Hi @Mark!

      Hope you’re doing well. I wanted to ask something about the medicine. My mom was taking Pirfenex 200 mg 2 tablets 3 times a day but since last month doctor has increased the medicine intake so now she’s taking 3 tablets at a time which is total 9 tablets a day. The medicine also we need to order from India since we live in Nepal. And we don’t know if the medicine is working or not? My mom is taking oxygen supplement 24/7. So do you know anything about the medicine intake and the side effects? Anything you share will be a great help for us.

      Warm regards,

      Reshma

    • #23694
      Mark Koziol
      Keymaster

      Hello Reshma, one of the main side effects of  esbriet is you become more susceptible to the suns rays. This is the main reason I chose Ofev. I am going to post a link at the bottom of my comments detailing the side effects of esbriet. Your pulmonary doctor will be able to determine if the medicine is working by the periodic pulmonary function tests ordered by your doctor. This tests determine the lung function in percentage form. Your mom is currently on the required maximum dosage of 9 tablets a day. This another reason I chose Ofev because I only had to take two. I know the medicines are similar in what they accomplish but the do have different side effects. I know more about Ofev because I was on it for 11 months. Take care and thank you for being there for your mother. mark.

      https://www.esbriet.com/taking-esbriet/managing-certain-side-effects.html

       

    • #23695
      Reshma Joshi
      Participant

      Hello @mark-koziol
      Thank you so much for making me understand. I’ll ask her doctor next time if we can switch to Ofev next time and it’s consequences on her case.
      Also I want to ask since my mom is taking oxygen supplement 24/7 and we’re making her walk for few minutes every day but some days it’s very difficult to walk even with oxygen, she started to cough a lot so we’re very confused whether we should make her walk in such condition? At the same time we’re afraid she might not be able to do her daily activities if we just put her in rest. So we’re very confused what to do. Please suggest me if you know something about it.
      Thank you always for your response Mark 🙏

      Warm regards,

      Reshma

      • This reply was modified 2 weeks ago by Charlene Marshall. Reason: tagging, formatting to remove code
    • #23718
      Mark Koziol
      Keymaster

      Hello Reshma, you should ask your mom’s physician if there is a pulmonary rehabilitation program available in your area. If she participates in one of these she will be doing so under the care of medical professionals. This helped me immensely. Take care, Mark

    • #23733
      Reshma Joshi
      Participant

      Hello @mark-koziol :

      This is the drawback of living in developing countries like Nepal where there’s no such rehabilitation for the patients. Doctors here just prescribe the medicine and that’s it. We ourselves are doing research and watching YouTube videos for the good exercises for IPF patients. There’s a big difference in medical treatment in different countries. So we’re doing our best according to our resource availability. Anyway thank you  for always responding to us. It means a lot to me and my family.

      Warm regards, Reshma

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