Pulmonary Fibrosis News Forums logo
  • Home
  • About Our Forums
  • Forums
  • Groups
  • Members
  • Activity
  • Search
  • What can we help you find today?

Carol Rubin

Home Members Carol Rubin
show less show more
Profile picture of Carol Rubin

@carolrubin5

The story on green tea extract is that oral doses that have anti-fibrotic effects are too toxic for the liver. The GALACTICA-1 study is testing an inhaled galectin-3 inhibitor administered by dry powder inhalation over 52 weeks. You can find it listed in ClinicalTrials.gov. NCT number is NCTO3832946 to check eligibility. View
  • Activity
  • Profile
  • Friends 0
  • Groups 0
  • Forums
  • Articles
  • Personal
  • Mentions
  • Favorites
  • Friends
  • Groups
  • Profile picture of Carol Rubin

    Carol Rubin replied to the topic Dehydration and Pulmonary Fibrosis (PF) in the forum Pulmonary Fibrosis Awareness & Advocacy 4 months ago

    I’m on Ofev and I’ve noticed that I’m always thirsty. Even when I think I’m hungry I’m really only thirsty! I do drink a lot of water but it doesn’t seem to alleviate the thirst!

  • Profile picture of Carol Rubin

    Carol Rubin replied to the topic Dental Issues with OFEV use in the forum Using Our Forums 1 year, 5 months ago

    Hi Libby! Thanks so much for your post sharing your personal experiences with teeth movement. While there is nothing in the literature about teeth shifting due to Ofev, the rapid change in my mouth certainly seemed to correspond with my starting the anti fibrotic. But then again I am getting old!! Fondly, Carol

  • Profile picture of Carol Rubin

    Carol Rubin started the topic Dental Issues with OFEV use in the forum Using Our Forums 1 year, 6 months ago

    I have seen some posts about dental pain but none about my problem, which is shifting of my teeth. I was wondering if the dental pain people are suffering might be due to shifting of their teeth that they are unaware of. If your teeth are close together, the shifting could definitely cause pain. In my case, my teeth are spaced so the movement…[Read more]

  • Profile picture of Carol Rubin

    Carol Rubin replied to the topic Dental Issues in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 6 months ago

    Thanks for sharing all the dental posts. Has anyone had issues with teeth shifting out of alignment? I have noticed a dramatic shift in my teeth since I started Ofev. My dentist thinks it could be due to the anti-fibrotic nature of the drug. Any comments would be appreciated. Carol

  • Profile picture of Carol Rubin

    Carol Rubin replied to the topic Ofev in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years ago

    Hello all. I’ve been on 100mg OFEV for 2 weeks now and have had no side effects. I also just got my first COVID vaccine and only suffered a sore arm for 2 days. I was wondering to people who have had no side effects on 100mg frequently get side effects on 150mg? I’ll be upping my dose after the first month. Thanks for any comments. Carol

  • Profile picture of Carol Rubin

    Carol Rubin replied to the topic Just got approved for Ofev in the forum Ofev (Nintedanib) 2 years ago

    Rachel, I’m glad you get reduced to $12 month after January. I’m on medicare as well, and I was told once I reached my $6600 deductible the co-pay would drop to about $600/month. How did yours go down so much? Does it have to do with your supplement plan or maybe your income?  I’m very befuddled by the variation in what people pay for the same…[Read more]

  • Profile picture of Carol Rubin

    Carol Rubin replied to the topic Just got approved for Ofev in the forum Ofev (Nintedanib) 2 years ago

    Thanks Charlene. I’m going to look into the inhaled green tea study on Monday. I need to find out if I was rejected because I’m not sick enough or because I live too far from the study sites. They are in Houston and San Antonio and I live in Austin (Texas). I’ll travel if I have to. It’s so hard to do anything now because of COVID.

  • Profile picture of Carol Rubin

    Carol Rubin replied to the topic Just got approved for Ofev in the forum Ofev (Nintedanib) 2 years ago

    1. Hi Pete.  You have it better than me. I’m on Medicare with a supplement and they cover 75% of the cost which sounds pretty good. Except it leaves my copay at $2500/month until I hit my $6600 deductible. Then I’m down to $600 and change. I won’t start until next week so I’ll see if I get any side effects. What clinical trial are you involved…

    [Read more]

  • Profile picture of Carol Rubin

    Carol Rubin posted a new activity comment 2 years ago

    Hey Mark. Thanks for the welcome. This is a whole new world for me. All the support I can get I’ll take!

    View Conversation
    • Profile picture of Mark Koziol
      Mark Koziol replied 2 years ago

      You are welcome Carol!

  • Profile picture of Carol Rubin

    Carol Rubin replied to the topic Just got approved for Ofev in the forum Ofev (Nintedanib) 2 years, 1 month ago

    Hi Libby,

    Thanks for you response. In regards to what planet your pulmonologist is from, she must be from the same one as mine. He told me “most people pay $40 month with all the help out there.” I have an appointment with him next week, and I’ll ask him! Carol

     

  • Profile picture of Carol Rubin

    Carol Rubin posted an update 2 years, 1 month ago

    The story on green tea extract is that oral doses that have anti-fibrotic effects are too toxic for the liver. The GALACTICA-1 study is testing an inhaled galectin-3 inhibitor administered by dry powder inhalation over 52 weeks. You can find it listed in ClinicalTrials.gov. NCT number is NCTO3832946 to check eligibility.

  • Profile picture of Carol Rubin

    Carol Rubin changed their profile picture 2 years, 1 month ago

  • Profile picture of Carol Rubin

    Carol Rubin replied to the topic Just got approved for Ofev in the forum Ofev (Nintedanib) 2 years, 1 month ago

    Hi Charlene,

    Thanks so much for your thoughtful response. Unfortunately I have gone through BI, Open Doors, two private funders, and the truth is, my husband and I are blessed and make too much money to qualify. While we live comfortably, the co-pay will definitely eat away at our retirement funds, and that is what we live off of. It is…[Read more]

  • Profile picture of Carol Rubin

    Carol Rubin replied to the topic Just got approved for Ofev in the forum Ofev (Nintedanib) 2 years, 1 month ago

    Hi all. I just got diagnosed with IPF last month. I’m starting OFEV next week because my co-pay is $2500/mo with Medicare covering 75%. Once I meet my 6600 dollar deductible it will drop to $600. I wasn’t going to start in December when I just have to start a new deductible in January. Who are all these people who get it for free or very low…[Read more]

  • Profile picture of Carol Rubin

    Carol Rubin posted an update 2 years, 1 month ago

    Thanks Mark. Everything is new. New diagnosis, soon to be new medication (OFEV) and new co-pay ($2500/month) with no relief in sight. I thought 2020 was bad, but it seems my prospects are not looking up for 2021.

  • Profile picture of Carol Rubin

    Carol Rubin became a registered member 2 years, 1 month ago

    • Profile picture of Mark Koziol
      Mark Koziol replied 2 years, 1 month ago

      Hi Carol, we are pleased to have you as a member of the pf forum. Welcome!

      • Profile picture of Carol Rubin
        Carol Rubin replied 2 years ago

        Hey Mark. Thanks for the welcome. This is a whole new world for me. All the support I can get I’ll take!

        • Profile picture of Mark Koziol
          Mark Koziol replied 2 years ago

          You are welcome Carol!

Profile Photo Claude Ballard Profile Photo Ben Robinson

Login

Register

Search forums

Generic selectors
Exact matches only
Search in title
Search in content
Post Type Selectors
Search in posts
Search in pages

Who’s Online

There are no users currently online

Newest Topics

  • Any Poetry Lovers Out There? by Christie Patient
  • Who Has Inspired You? by Charlene Marshall
  • Has anyone seen the film “More Than Ever” about an IPF patient? by Frank Bigley
  • Love Letters by Christie Patient
  • Larry Runyon by Samuel Kirton

Recent Replies

  • Everyday Challenges of Living with Pulmonary Fibrosis
  • Larry Runyon
  • Painful hand and leg cramps
  • Deep Tissue (or red light) Laser Therapy
  • Deep Tissue (or red light) Laser Therapy

Members

Newest | Active | Popular
  • Profile picture of Denise Stogdill
    Denise Stogdill
    Active 5 hours, 21 minutes ago
  • Profile picture of Margaret
    Margaret
    Active 6 hours, 25 minutes ago
  • Profile picture of Sharon Rousmaniere
    Sharon Rousmaniere
    Active 7 hours, 1 minute ago
  • Profile picture of Patti
    Patti
    Active 7 hours, 10 minutes ago
  • Profile picture of Natalie Mondor
    Natalie Mondor
    Active 7 hours, 46 minutes ago

Forums

  • Coronavirus (COVID-19) and Pulmonary Fibrosis
  • Healthy Recipe Sharing
  • Hobbies & Projects
  • Polls & Quizzes
  • Using Our Forums
  • Flash Briefings & Podcasts
  • Join the Discussion: Welcome to all PF/IPF Patients
  • 30 Days of PF
  • In Loving Memory
  • Wednesday Wins
  • Diagnosis​ ​Information​ ​and​ ​General​ ​Questions
  • Caregivers and Spouses
  • Employment & Pulmonary Fibrosis
  • Clinical Trials
  • Research and Development
  • Esbriet (Pirfenidone)
  • Ofev (Nintedanib)
  • Canadians Living with Pulmonary Fibrosis
  • Pulmonary Fibrosis Awareness & Advocacy
  • PF Caregivers, Family Members & Spouses
  • Living with Pulmonary Fibrosis: 50+
  • Pre/Post Lung Transplant
  • Young Adults Living with Pulmonary Fibrosis (40 & Under)
  • Upcoming Medical Appointments: Q&As
  • Most popular topics
  • Topics with no replies


Pulmonary Fibrosis News Today

BioNews Services, LLC
3 W Garden St
Suite 700
Pensacola, FL 32502
Email: [email protected]
Phone: +1-800-936-1363
  • Email Forum Support
  • Publishing Team
  • Leadership
  • Our Culture
  • Corrections Policy
  • Careers
  • Contact Us
  • Terms of Service
  • Privacy Policy
  • Disable Notifications
  • Advertising Policy

Disclaimer

Pulmonary Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

BioNews, Inc.

3 W Garden St
Suite 700
Pensacola, FL 32502
Website: bionews.com
Email: [email protected]
Phone: 1-800-936-1363

  • Email Forum Support
  • Publishing Team
  • Leadership
  • Our Culture
  • Corrections Policy
  • Careers
  • Contact Us
  • Terms of Service
  • Privacy Policy
  • Disable Notifications
  • Advertising Policy
Disclaimer

This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Copyright © 2017-2023 All rights reserved.

©[current-year] KLEO Template a premium and multipurpose theme from Seventh Queen