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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.
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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
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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
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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
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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
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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.
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@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
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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
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@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
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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
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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.
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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
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Thank you for the info Jaime. Are Flamex and codeine different medicines? And do we need prescription from the doctor for these medicines?
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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. -
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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
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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
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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. -
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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.
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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
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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
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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
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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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Hello @Mark!
Hope you’re doing well. I have few questions about steroids. How long can a patient take a steroid? Is it safe to take steroids for 15 days? And in which cases steroids are given to the patient? My mom is feeling better with the chronic cough from few days but the doctor (we visited another doctor as an alternative) precribed Cortilone for 15 days. My mom hasn’t taken steroids for this long before (only upto 7 days she’s taken) so we thought not to give her steroids for few days, if her condition gets bad then we’ll give it. Is this a good decision that we made?
Best wishes, Reshma
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Hello Reshma, they most likely gave your mom prednisone to clear up inflammation. Some patients who are diagnosed with pulmonary fibrosis and not IPF are prescribed steroids for an indefinite amount of time. I have had a lung transplant and protocol calls for me to be on prednisone forever. Because of this I get my bone density examined yearly and I am set to get an infusion to slow down the loss of bone density. One of the side effects of long term steroid use. On the other hand I have felt great since transplant and feel this medicine helps keep me alive along with a couple of others. I currently take 5 mg of prednisone. You should discuss with your physician but I do know you should never stop steroids but should taper down until you hit 0 mg. If they are talking about keeping her on, ask for how long and what mg they would like to get down to. For some patients when they initially start it’s like a huge adrenaline shot for them. Some feel exhilarated and full of energy. There are side effects. Some people feel like they have to eat non stop or have trouble sleeping to name a few. Please keep us informed on what is decided. Best wishes, Mark.
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Hello @Mark!
I’m always very grateful to you for your good advices. I didn’t know much about the steroids and also didn’t know that it should be gradually lower down to 0mg. Thank you so much for this information. I’ll surely ask the doctor about the steroids. We are very much keeping eye on my Mom.
Thank you so so much Mark ? Stay safe and happy ?
Best wishes,Reshma
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Hi all,
I have IPF and am taking Esbriet, 801mg per day (3 X 267mg).
I have recently been interested in taking Serrapeptase as well as the Esbriet as some say the Serrapeptase can reverse scarring in the lungs.
Can it be taken while taking Esbriet or will it counter the effectiveness of the Esbriet?
Any advice would be welcome.
Cecil
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Hello. I thank you all regarding Serrapeptase. Not tried it yet. It’s fully broken down by stomach acids so get enteric coated. Went to my ENT guru yesterday as I am chronically hoarse and have mucus since my diagnosis 2018. I have read IPF patients have a abnormal mucus-producing gene. My ENT feels this is all c/w reflux which may very well be a “root cause” of IPF. I use CPAP regularly. I use Omeprazole 20 daily—he suggested going to 2x/day. He was adamant about me discontinuing carbonated drinks (Im a Pepsi zero sugar addict!!). The “bubbles” cause reflux. I’ve also started Zinc. Just be aware of zinc toxicity (>50mg) which can deplete Cu (copper) levels. Many eye vitamins for dry AMD (adult macular degeneration) have a high amount of Zinc in them!! Every time I try to cough up phlegm irritates the vocal cords➡️raspy voice. Stay away from D (eg Mucinex-D) as that dries it out. I will report soon. Sleep apnea (if not been tested) should be researched. Thank everyone who has been so helpful. Praying for a safe & healthy 2023. ????
Donald Salzberg
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Hi Jaime,
I had phlegm but nearly stopped it by using Serrapeptase. Started it over 4 years ago and take 720,000 SU nightly on an EMPTY stomach and NO other meds for 3 hours on either side. You can start at 480,000 SU.
Serrapeptase sees pills as dead protein, it dissolves them faster. Did that once with niacin – wish I hadn’t. Easy to find pure SU on Amazon.
Also, take EGCG 600mg in the morning and green tea at midday.
Just started practicing what deep divers do before diving and even though I cannot hold my breath long the added pressure makes me clear out stuff. I do this after a shower and turn up the O2 before I start. Try to do 5 reps adding just 5 or 10 seconds to each.
Stay well…
Steve
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