Pulmonary Fibrosis News Forums Forums PF Communities Canadians With PF just want to share some of my experience

  • just want to share some of my experience

    Posted by jaime-l-manriquez on July 21, 2019 at 1:07 pm

    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.

    steve-dragoo replied 1 year, 1 month ago 16 Members · 48 Replies
  • 48 Replies
  • linda-williams

    Member
    July 21, 2019 at 3:14 pm

    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

    • steve-dragoo

      Member
      July 23, 2019 at 5:33 pm

      @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

      • dianaj

        Member
        November 28, 2022 at 8:49 am

        Hi Steve. Can you tell me about your experience with laser therapy? How many times a week do you get it, and how long before you felt some relief? Thank you!

  • jaime-l-manriquez

    Member
    July 21, 2019 at 5:42 pm

    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

  • linda-williams

    Member
    July 21, 2019 at 6:34 pm

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

  • mark-koziol

    Member
    July 22, 2019 at 7:50 am

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

  • linda-williams

    Member
    July 22, 2019 at 12:08 pm

    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

    • mark-koziol

      Member
      July 22, 2019 at 6:17 pm

      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

    • Charlene Marshall

      Member
      July 23, 2019 at 8:37 am

      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.

  • linda-williams

    Member
    July 22, 2019 at 6:22 pm

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

  • mark-koziol

    Member
    July 22, 2019 at 8:27 pm

    Thank you Linda!

  • karmin-chowbay

    Member
    July 23, 2019 at 9:38 am

    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.

    • john-l

      Member
      July 23, 2019 at 11:05 am

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

    • Charlene Marshall

      Member
      July 23, 2019 at 6:16 pm

      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?

  • linda-williams

    Member
    July 23, 2019 at 5:46 pm

    @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

  • steve-dragoo

    Member
    July 23, 2019 at 6:09 pm

    @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

  • kristina-grilo

    Member
    July 23, 2019 at 7:02 pm

    Steve, how are Wii laboratories herbs working for you?

  • linda-williams

    Member
    July 23, 2019 at 7:32 pm

    @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

  • steve-dragoo

    Member
    July 23, 2019 at 7:39 pm

    @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

  • jaime-l-manriquez

    Member
    July 24, 2019 at 7:03 am

    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

     

     

  • robert-carlson

    Member
    July 24, 2019 at 1:14 pm

    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.

    • steve-dragoo

      Member
      July 24, 2019 at 5:22 pm

      @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

  • reshma-joshi

    Member
    December 26, 2019 at 9:37 am

    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.

  • jaime-l-manriquez

    Member
    December 26, 2019 at 12:01 pm

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

    best regards

  • reshma-joshi

    Member
    December 27, 2019 at 6:33 am

    @jaimeluciano

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

  • Charlene Marshall

    Member
    December 28, 2019 at 4:24 pm

    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.

     

     

  • reshma-joshi

    Member
    December 29, 2019 at 10:03 am

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

  • Charlene Marshall

    Member
    December 29, 2019 at 11:08 am

    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.

  • lorraine

    Member
    December 31, 2019 at 9:14 am

    @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

     

     

  • karen-martin

    Member
    December 31, 2019 at 1:40 pm

    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

  • anne-philiben

    Member
    December 31, 2019 at 11:55 pm

    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.

Page 1 of 2

Log in to reply.