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

  • Charlene Marshall

    Member
    January 1, 2020 at 8:45 am

    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.

  • Charlene Marshall

    Member
    January 1, 2020 at 8:51 am

    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.

  • karen-martin

    Member
    January 2, 2020 at 2:27 pm

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

  • Charlene Marshall

    Member
    January 5, 2020 at 8:45 am

    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.

  • muhammad-akram-ali

    Member
    February 22, 2020 at 11:35 pm

    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.

  • mark-koziol

    Member
    February 23, 2020 at 9:50 am

    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/

    Gabapentin is a Proven Treatment for Refractory Chronic Cough

  • reshma-joshi

    Member
    March 26, 2020 at 10:53 am

    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

  • mark-koziol

    Member
    March 26, 2020 at 11:37 am

    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

     

  • reshma-joshi

    Member
    March 26, 2020 at 12:07 pm

    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

  • mark-koziol

    Member
    March 27, 2020 at 7:46 am

    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

  • reshma-joshi

    Member
    March 27, 2020 at 11:56 am

    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

  • reshma-joshi

    Member
    April 15, 2020 at 12:43 am

    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

  • mark-koziol

    Member
    April 15, 2020 at 7:55 am

    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.

  • reshma-joshi

    Member
    April 16, 2020 at 9:38 am

    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

  • mark-koziol

    Member
    April 16, 2020 at 9:59 am

    Hello Reshma, you are welcome. Thank you for the kind words. Mark

  • cecil-zlotnick

    Member
    December 28, 2022 at 7:52 am

    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

  • donald-salzberg-md

    Member
    December 29, 2022 at 2:27 pm

    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

  • steve-dragoo

    Member
    December 29, 2022 at 9:06 pm

    @jaimeluciano

    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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