Log In or Register to Join The Conversation!
Viewing 14 reply threads
  • Author
    Posts
    • #23530
      Cat Young
      Participant

      Hi everyone, I’m pretty new to the forums. Hope everyone is doing well today. 🙂

      I joined today because recently my aunt was taken off of Esbriet (her doctor felt that her side effects were too much) and was due to go in for a chest xray and lung function tests later this month but due to Covid-19, her appointment was cancelled.

      My mother spoke to her cousin in London who is a well known eastern medical doctor and recommended this medication from Korea to her. It’s called Pyunkang and is about $500 a month. She said that she had a friend in NY who had a similar diagnosis and after taking this medication for some time, she reported that she started feeling better. Of course I want my aunt to feel better. She has been taking gabapentin for cough but doesn’t seem to be helping that much. My aunt’s voice has been sounding a little coarse lately and she loves to nap often now, which she never really used to do.

      I googled this medication and it according to the research, it could possibly improve her symptoms.

      Does anyone have any experience with taking this? I am skeptical but the research was done by NIH.

      I will leave a link here:

      https://www.ncbi.nlm.nih.gov/pubmed/29933536

    • #23540
      Richard J Shank
      Participant

      Hi,

      I’ve not taken that medicine but I have been taking Chinese herbal medicine for the past year.  Several months I used the IPF from Wei Laboratories (~$1000 per 28 day supply) and on several other different months I used a ‘soup’ (about $250 per month) prescribed by a Traditional Chinese doctor in Seattle.  My wife brews the soup for me based on the herbs prescribed by the doctor.  I have also been taking esbriet since 2 months after I started eastern medicine.

      When I first started the eastern medicine, my chest was very tight and it hurt to breath.  I had a lump in my throat that felt like an apple and was very uncomfortable.  All that went away after several months.  I am short of breath but my lung tests from my pulmonologist over the past year are stable.

      I don’t think I’m getting better as far as the scarring in my lungs but I do feel significantly better in quality of life.  I also have severe allergies which aggravate this problem a lot so I’m taking Zirtec and Mucinex daily.  On really bad allergy days, I take a dayquil or nyquil to get me over the hump.

      Also, as the drop in oxygen during activity will increase heart rate, I take CoQ10 2 or 3 times per day.  This helps keep my heart healthy.

      My pulmonologist (and most of the people in his office) think eastern medicine is nonsense.  He wanted me on oxygen 24/7 15 months ago.  The Chinese Traditional medicine say don’t use it.  They believe it makes the disease progress faster.  So, I have not done oxygen over the past 15 months.  This upset my pulmonologist when I told him I wasn’t doing oxygen at the direction of my Chinese doctors.  However, the proof is in the pudding.  I’m doing very well considering.  He has stopped badmouthing Chinese medicine but I’m certain he believes this is all from the esbriet.  I’m not dropping either as going downhill with this disease is a very poor option.

      This has just been my experience.  I can’t say how it will affect others.

       

    • #23548
      Karen Boettin.
      Participant

      @rjshank

       

      Could you post the soup recipe.I’ve been do ing laser and feel it has helped.

    • #23551

      @catyoung

      Hi Cat,

      Welcome again to the PF forums, and thanks for writing to us regarding this topic. Like you, I am usually skeptical about “alternative” therapies, but it is reassuring that the NIH published the article you shared. I’ve also connected with patients through the forum who swear that some alternative therapies have helped them. It is hard not to be skeptical when you hear that, but of course I don’t have any personal experiences to share with you!

      Regarding the Esbriet side effects, I had this happen with Ofev and had to taper down my dose from 150mg to 100mg 2x daily and slowly work my way back up after stopping it entirely at first. I know of other patients with Ofev who had to do this as well. Might this be an option for your aunt with Esbriet? Of course I’m not an MD and can’t recommend that officially, but something to maybe ask her doctor about.

      Wishing you and your aunt the very best. Please circle back and let us know what you decide about the medication…

      Thinking of you.
      Charlene.

    • #23557
      Cat Young
      Participant

      Thanks Charlene! I have asked her to go back to her doctor and ask if she can reduce her dosage instead of taking her off of it completely, however my aunt said that her doctor is a very busy man and that if he took her off of it then he must have had a good reason. A little difficult to convince a stubborn little senior lady when I live on the opposite side of the country haha

       

      My aunt received the pills today. I will keep you guys posted on her progress. Fingers crossed! 🙂

    • #23562
      Miltont
      Participant

      @catyoung

      That eastern medicine sound appropriate for treating cystic fibrosis.


      @rjshank

      Richard, I had the lump in the throat and the soreness to breathe until my GP put me on a PPI (proton pump inhibitor) to suppress the manufacture of stomah acid. It worked. Ask your doctor if this could be your problem.

       

    • #23588

      I will indeed keep my fingers crossed for your aunt @catyoung ! I’d love to hear how she is doing if you think of circling back and letting us know.

      Yes, it sure would be tough to convince someone of something from across the country. My Mom is also a strong believer/supporting in “whatever the doctor says, goes” as she really respects physicians. Not that I disagree or blame her for this, but advocating for our own health experiences is so important. I hope she can try the Esbriet at a lower dose successfully, or even Ofev? I know Ofev you can for sure lower the dose and manage it a bit better as I had to do this. Keep in touch! 🙂
      Charlene.

    • #23594
      Cat Young
      Participant

      Thanks Charlene, I will 🙂

    • #23593
      Cat Young
      Participant

      Thank you @miltont that’s what I was thinking as well. So far there aren’t too many alternatives that I know of so I think she will just continue taking it for now.

    • #23616
      Donald Salzberg MD
      Participant

      Hello. I’m Don aka Doctor Don. I’m an Ophthalmologist (65 yo) who was diagnosed with IPF 18 months ago but i knew even 2.5 years ago something wasn’t ok. I am a bigger fan of alternative medicine than before. I’m looking into Tai Chi for IPF. I am tolerating OFEV 150 mg bid. I’ve had success with taking Zofran 8mg with my AM pill—less nausea (which is random). I’m also excited about an article i read on inhalation of lung stem cell secretions. I’m grateful that OFEV and Esbriet are available. Did you know they were approved in Japan over 10 years ago??I’m angry at our FDA as I think and know  patients who never got the opportunity of these meds. I’ve read about acupuncture benefits as well. Many trials going on—learned of one for IPF patients with persistent coughing. I agree that once you are using oxygen regularly it’s likely to become necessary. Anyone that has passed the altitude test (15% oxygen for 30 min) (I did) and still get hypoxia (low oxygen) in an airplane??  I’m normally at 95% SiO2 and mine dropped to 83-85!!  Don

    • #23643

      Hi Don,

      Thanks for writing to us and welcome to the forums!

      Zofran often helps me if I am struggling with nausea due to my Ofev. Oddly enough, so does imodium if I am struggling with GI side effects, but only the sublingual tablet (under the tongue) the oral tablet doesn’t do anything for me. Im really glad to hear you’re tolerating the 150mg dose. Tai Chi tends to help with better breathing and gentle body stretches overall, so I can imagine it would be helpful for those of us with IPF 🙂

      I recently had a High Altitude Simulation Test (HAST) when I flew across the country at the end of February, and determined my oxygen needs while on board an aircraft. It was helpful… if you’re dropping below 88%, I’d have the oxygen need re-evaluated before flying again. Stay safe and thanks for connecting with us.
      Char.

    • #23703
      Donald Salzberg MD
      Participant

      Hi Charlene. As a physician i hope i can be of some help. With all this craziness with COVID, my age (65) etc I’m ready to retire and need to find a way to help others. Be well

      and stay safe. Don S

    • #23704
      Cat Young
      Participant

      Hey Dr. Don, please be safe out there. I will try to encourage my aunt to try tai chi once this whole coronavirus period lifts. She went outside yesterday to walk along the beach. Tai Chi would be a great way to get her body moving safely inside her home. Hope you’re having a good day 🙂

    • #23709

      Hi Don,

      Thanks so much for writing and glad you’ve found our forums! Isn’t the chaos of COVID-19 just unreal? It is breaking my heart with what it is doing to transplant programs (pausing them) although people are in desperate need. Just seems so unfair! I hope you remain safe as well, and your practice isn’t too busy at the moment. Thank you for the hard work you do in treating your patients in this chaotic time! Looking forward to getting to know you a bit more 🙂
      Charlene.

    • #23741
      Miltont
      Participant

      Dr Don, are you happy to have a conservation with me about a proposed double blind trial for a non-medical treatment that I have been using to great effect? If so please email me at [email protected].

      Cheers and thanks in anticipation

       

Viewing 14 reply threads
  • You must be logged in to reply to this topic.
Copyright © 2017-2020 All rights reserved.

©2020 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
or

Log in with your credentials

or    

Forgot your details?

or

Create Account