• Thom posted an update 4 weeks ago

    @lorraine Hey! How ya doing Typhoid Mary? I’ve not been on here in a while. I do hope you are doing okay.

  • Thom and Profile picture of Tony BuxtonTony Buxton are now friends 3 months ago

  • Thom and Profile picture of LorraineLorraine are now friends 3 months ago

  • Hello Charlene,

    Although it’s difficult for me to identify what you feel with your IPF, I do understand.  30 years ago I had a TBI the result of a car accident.  Following the injury and 2 brain ops, I became a different person.  One that I did not know or recognize.  I was scared of leaving my wife and kids behind.  My parents and siblings I’m…[Read more]

  • Thom posted an update 3 months ago

    @lorraine the plague! I loved it. because I told someone that last week
    It’s not contagious!!!
    You’re not too fat away. I’m in CT. Matter of fact I was driving to Brooklyn last week and somehow wound up at the WTC. My 90 minute ride lasted 6 hours. Was I ever lost!

    I was on ofev for 10 days. but became really sick. It screwed with my liver…[Read more]

  • I’m curious to know what the pulmonologist are saying about cold laser therapy. So far I have not read anything. When I mentioned it to my doctor he actually seemed annoyed that I would even bring it up, his reply was if it’s not FDA-approved I’m not interested. Has anyone’s pulmonologist seeing the results so far of the use of the cold laser.…[Read more]

  • Thom replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 3 months, 3 weeks ago

    After almost 2 weeks on ofev with zero symptoms, all hell broke loose yesterday. I skipped it today because I’m still at it, will try again tomorrow hopefully it takes a turn for the best. Thom

  • Thom replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 3 months, 4 weeks ago

    Thank you for the well wishes Charlene.  I’m hoping for the best too.

    Tony mentioned .25 cents in India! Just a short note on that.  My doctor at Yale said she purchased ofev from India for her father.  But to be safe she had the pills analyzed at Yale.  They were the same, but the dosage had to be adjusted.  Evidently the med was the same but…[Read more]

  • Thom replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 4 months ago

    I have been on OFEV for about 10 days 150 mg two times a day. So far no side effects absolutely zero. I hope it stays this way time will tell.


  • Thom replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 4 months, 1 week ago

    I was diagnosed in October with ipf. I retired after 53 years I am self-employed, 5 days later I was told I had ipf not the news I wanted to hear. I am on my third pulmonologist I had to search for someone that I felt comfortable with. I was first prescribed with esbriet the doctor I am with now said I would be better off with ofev. I started ofev…[Read more]

  • Thom‘s profile was updated 5 months ago

  • Thom changed their profile picture 5 months ago

  • It’s all very confusing to me also. I did the walk without a problem, but a slight incline I’m sure would have changed that.  Yet I went on a treadmill for ten minutes at a speed of nearly 4.0 (not sure what the speed represents) and was told it was above average.  But as of tonight I will be on 4 liters  of ox, only during sleep.  Charlene, I tol…[Read more]

  • Thom posted an update 5 months, 3 weeks ago


    Hello Charlene thank you for the reply. Yes the doctor at Yale University is a pulmonologist, she practices at Yale, NYU, and the VA hospital in New Haven. When I initially went to Yale I was seen by several doctors. So I’m sure the decision was not hers alone. When I was told to find a local pulmonologist at the conclusion of…[Read more]

    • Hi @Thom, thanks so much for getting back to me and I hope you’ve had an ice weekend!
      It does sound like the Pulmonologists decision to put you on Ofev was a very educated one, especially if she consulted other physicians. I definitely would press for more information from the local doctor who says he/she doesn’t want you on Ofev. Might Esbriet be…[Read more]

  • Thom posted an update 6 months, 3 weeks ago

    @karl Hi Karl, I’m new here, and have no idea where this will be posted. But I’ll take my chance.
    I’m with you on how to tell others what’s going on. I recently close my business and retired and a few days later found out I had this disease I’d never heard of. I had plans visit some old friends that I’ve not seen in years and told them to…[Read more]

  • Thom posted an update 6 months, 3 weeks ago

    It’s all new to me, and I’m just sort of trying to digest it.
    I’m married, 2 kids, 2 grandkids. I retired October 25, and five days later the doc told me I have this disease and if I’m lucky, I have ten years. He wanted me to start one of the two meds immediately. After 15 minutes I told my wife let’s go. I came hope and began reading, he…[Read more]

  • Thom posted a new activity comment 6 months, 4 weeks ago

    Thank you.

  • Thom became a registered member 7 months ago

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