1. Debbie Guill for Robert Guill says:

    Want more info on trials that could help my husband that has been diagnosed with pulmonary fibrosis. He’s on ofev right now with no serious side effects. Has been on it for 4 months but the results are not as effective as we expected, and would like to see about another clinical trial. Just found out about 5 months ago . Please respond as he is now on limited oxygen and has no other health issues other than the pulmonary fibrosis. Dr. anders in Bakersfield prescribed the Ofev but he’s not showing signs of improvement . He goes in for another scan on Jan. 23 rd to see if the Ofev has stopped the spreading . Please return my call, 661-301-7204, this is a great man I have had the privilege to be with for 43 years and I feel he deserves a chance at something that is more effective. Thank you so much!!

    • Debbie Guill for Robert Guill says:

      I want to know if there are any other options that could help with his coughing , breathing and energy level. Something that could help him along with his Ofev. We’ll know more about the effectiveness of Ofev after the next scan. Thank you

      • Mark Mattison says:

        My doctor prescribed Benzonatate pills for my cough and it has help with the cough although I still have coughing spells with my o2 drops below 88.

        • Risa Sullivan says:

          Does the Talidomide help with all the things mentioned in the inquiry (cough, breathing, and energy level)? I have used Benzonatate med which did help suppress cough. Thanks.

      • Suzanne says:

        Debbie, I take Baclofen (10 mg twice per day – morning and evening) and my cough is almost non-existent. Baclofen is not known as a cough reducing drug but rather for MS, however, my doctor felt it would help and it has. I started it two and a half years ago.

        Also, exercise, particularly walking and some strength training have helped me a lot to continue to enjoy life even with this disease.

    • Carol says:

      Debbie, you can search http://www.clinicaltrials.gov and find all of the current clinical trials for pulmonary fibrosis.

      Also, I believe most people do not improve while taking Ofev or Esbriet. These drugs slow down progression of our illness.

      For me, besides taking Esbriet, I find a good diet and exercise are the best weapons I have in fighting pulmonary fibrosis. I highly recommend your husband asking his doctor to refer him to pulmonary rehabilitation. It is wonderful. They show you how to safely exercise and to breathe better.

    • Waqar says:

      I read some time ago on this website that they did experiment on a mouse with a medicine. The medicine not only stopped the diseases but also helped to reverse the disease. I do not know everything about it but you can find the article if you search on this website or i can find it and send it to you.

      • Timothy Middleton says:

        It was the inhaled Thyroid hormone that controls healing on the body. It even worked on human lungs on the lab. Google inhaled thyroid hormone for lung regeneration. It was somewhere in SC as I recall last September. They were supposed to speaking with the FDA regarding moving on to human trials.

    • IAN YOUNG says:

      I’m also on Ofev since about a year ago, but currently do not require supplemental oxygen. For 9 months I’ve been attending a specialised gym three times per week doing specially chosen exercises – both respiratory and musculation with weights and presses – plus 30 mins on an exercise bicycle (with 2 litres/min of oxygen)- total time about 90 mins per session. I also use a small breathing training apparatus (“Powerbreathe”) recommended by my physiotherapist. All seem to be helping to slow down the disease progression.

  2. Debbie Guill for Robert Guill says:

    I would like more info on the trials that would give my husband a chance to have a better quality of life. He’s still wanting to fight for quality of life and just being healthier and more active. Please guide me to involving him in whatever trial or medicines besides Ofev might make a difference in his ability to enjoy simple pleasures in life. He otherwise has no issues other than the scarring of tissue . Please let me know.

  3. Larry Larson says:

    I was diagnosed with Pulmonary fibrosis last year in June, nothing was given to me for my cough. I visited with my family doctor in November who was amazed that the lung doctor had not helped with the cough. He prescribed both Stiolto Respimat and Symbicort. After about two weeks my cough subsided. I now take Stiolto Respimat when I have a coughing spell and have had good results. Stiolto is not steroid and that is the reason I have continued to use it.

  4. S.Comparini says:

    Thank you for very valuable information, timely, up to date, and provides pinpoint medical and research summery support. The only disparity is the somewhat rowdy news-media chosen for publication of a complex, not common, deadly disease. Again, obliged for your offer to notify me of new posts by email.

    • Pat Duby says:

      I have been diagnosed with ipf. I am in the beginning stages and am willing to enter any clinical trial that you believe would be helpful

  5. Lisa Bates says:

    Hi, I would be interested in a clinical trial. I have PF diagnosed august of 2016′. Thank you for doing research on the respiratory system.

  6. cindy says:

    I have been using Gabapatin at night to help me sleep, along with metformin 850 *to help reduce or reverse the IPF., my coughing is reduced and my energy is much higher. Not sure about reversal or improvement since I have not bothered to spend more money just to be told that it is fatal, or to put me on a drug that causes more side effects than I already have, and waiting for a cure seems fruitless, so I am doing what seems to work.


      Cindy, has the metformin been approved for ipf, and if so did your pulmonologist prescribe it? I read that they were doing trials on it.

  7. Charles Spencer says:

    Almost one year ago, I was diagnosed with IPF. I am currently taking Esbriet, and have had very little, if any decline. I do not use or need oxygen. However, I have always stayed in pretty good shape. I go to our fitness center a minimum of three times a week, and generally play golf 1-3 times a week. I am 72 years old, and have been retired for 4+ years. My wife and I walked two miles, five days a week for 35 years, so again I started this IPF journey in a bit better shape than most people.
    I am certainly interested in any trials that may be available. I live just outside of San Antonio, Texas but travel to both Austin and Dallas routinely.
    Please advise what steps are necessary to join a clinical trial.

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