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  • My pulmonologist had no idea why my teeth and nothing else hurt. Neither did my dentist. So pulmonologist suggested a CT scan. Meanwhile i went to my GP. As soon as i told him why i was there he said sinus infection. He examined me, again he said sinus infection. Gave me an antibiotic for 10 days. I felt great, pain was gone. Meanwhile…[Read more]

  • Thom posted an update 1 month ago

    Hair Loss vs Breathing

    Sorry, but given the option of breathing and losing hair, I’d stick with the ofev. Most of the hair on my body has disappeared. Legs, chest, eye brows, and head. Its odd because my arms and other parts are unaffected. Big deal, its only hair. Thats how i see it.
    The ofev has lessened the effects on my lungs. I get CT…[Read more]

  • Hello everyone.  Its been a while since ive checked in. I hope everyone is doing alright.

    I am doing very well, all things considered.   Dealing with Ofev is tough business.  Diarrhea being the worst, and lately vomiting.  So it is! Now something new, so i thought I’d see if i was alone with this new development.

    My teeth are healthy, i visi…[Read more]

  • Thom replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 3 months, 2 weeks ago

    Yes I think its Lorraine!  Thanks.

    My wife now has both eyes done, one week apart.  She can see just fine.  She noticed wrinkles, brown spots, windows need washing.  I’ll stop there!

  • Thom replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 3 months, 2 weeks ago

    If we dont laugh, we will cry.  Laughter is the best medicine.

    I figured out what I did.  I do recall replying to you, it was quite long too.  My typical getting carried away with writing.  The problem is I didnt write the reply here.  Rather I sent email, it probably bounced back and went to SPAM.  I suppose its lost in space now and a few years…[Read more]

  • Thom replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 3 months, 2 weeks ago

    Hello Charlene.  Dont laugh, I dont remember if I replied to you?

    Thom

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

    Hmm, feel as though I missed something here, buy not sure what it was.

    HELP!  Somebody fill me in.  The forum is dying?  What’s that about!

    I’ve had my hands full that tropical storm that I can neither spell or pronounce hit hard around here.  No power, phone service.  After 8 days it finally returned.  No AC was the worst in 95⁰ weather…[Read more]

  • Hi there Cheryl.

    You’re going to be fine!  Just takes getting use to, that’s all.  I’m probably 18 months.  I have my times of diarrhea,  vomiting occasionally,  mostly mucus.  The hair loss dont bother me.  I’d love to go swimming but just about all the hair I want is gone.  LOL. It didnt affect the nose or ears though!  I still have that!! …[Read more]

  • Hello Libby.  I’ve been on 100 mg for about 15 months. Not keeping track.

    When I was first diagnosed, I realized the dr I had was an idiot.  I dropped him and went to Yale in New Haven CT.  The dr I had there was from india, a pulmonologist.  She prescribed ofev, I told her no way could I afford it.  I mentioned I read it’s available from indi…[Read more]

  • OFEV SIDE EFFECTS AND ME

    I’ve been on the stuff for almost 18 months.  Who’s keeping track!

    Its brutal to me. To say the least.  Rash on my arm, red itchy ears with infection that comes and goes.  A little pain, but I’ve adapted to it.  I was told at Yale I had cirrhosis. but evidently my liver is going back to normal.  They told me to stop taki…[Read more]

  • Thom replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 7 months, 1 week ago

    Sorry. I should have mentioned.   I live in Connecticut,  USA

  • Thom replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 7 months, 2 weeks ago

    my doc gave the 150 mg to another patient.. the person was thrilled.  He had met while waiting for script to come through

  • TO ALL

    For those in need of OFEV.

    Try calling direct.

    OPENDOORS

    1-866-673-6366

    1-866-OPENDOOR

    Its Boehringer Inglehiem  patient support for information and resources.

     

     

  • Hey there Randy.

    Dont lose hope!!  There are other sources that help with medicines.   Look here on line and you will find several.  Not for nothing but I’d look up Boehringer Inglehiem Danbury. CT and email them  you have nothing to lose and everything to gain.  About 2 months ago they called me, asked a few questions about ofev.  They also a…[Read more]

  • Hello Randy,

    When I was first diagnosed I went to Yale New Haven hospital.   There was no way I could afford $10,000 a month.  My doctor was from India.   She told me her mom was now living in the US and has IPF and that OFEV was made in india by Boehringer Inglehiem.  She was having it sent to her.  So my GUESS is it’s the same med.

    A person…[Read more]

  • I try to read all that is posted on this site.  Please pardon me if i skipped by this.  But ive not read anything lately about those that have been getting laser treatments.  Are there any updates on treatments and how are those of you doing?

    Thanks…..Thom

  • Hello Jane, sorry to hear about your diagnosis.

    I was diagnosed abot 16 months ago.  A couple of months later i began to take 150 mg of OFEV.  I was alright with it for a short time.  I think perhaps 3 or 4 weeks.  Than suddenly everything let go.  My personal suggestion is dont stray to far from home until you are sure.  Diarrhea seems to be th…[Read more]

  • BARELY NOT NORMAL?  Sounds like double talk.  Pardon me. Im most certainly no doctor.  However i agree with the others, you do need to see a more knowledgeable physician.

    The first pulmonologist i went to see never as much as even used a pulse ox on me.  Within 10 minutes of meeting him he blurted out to my wife that I would be dead in about 1 y…[Read more]

  • Post Script.

    Years before i was diagnosed my GP wondered aloud why I was always short of breath.  He even sent me for CT scan and ultra sound.  No one said a word

  • If i had to guess, I’d say the vast majority of the population worldwide knows little about the disease.  Its important to keep it out front.

    Thom

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