Oh its terrible!  I’m in ofev about 2 years.

The place I get it from says to think of B R A T.

BANANAS,  APPLESAUCE,  RICE, TOAST.

I’m not a rice eater, but the other three do work for me.

Hang in there!  The ofev is working for me.  I just have to deal with side effects

 

Good luck.

Thom

 

 

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. … 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… Read more

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!

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… Read more

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

Thom

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… 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… 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… 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… Read more

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

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… 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… 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… 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… 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

I try to read all that is posted on this.  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 Charlene.  It’s always nice to hear from you.

As for my cousin passing from IPF, I’m convinced hes the genetic link for me.   Unfortunately as most everyone, families become scattered.   I still have several relatives on the west coast but I can find them.

Just do what you know to take care of yourself, there in nothing that any of us… Read more

I was a self employed ornamental iron worker for over 54 years.  I worked with my dad, my dad worked for his dad, and my son, 44 worked with me.  My son shows no sign of IPF, my father died of pancreatic cancer,  his father heart failure. At a very old age. The closed indoor environment was terrible.  I never gave it a second thought. … Read more

Happy new year to all. Its been some time since I’ve posted here.
The liver (minus onions) caught my eye.
Ive been on ofev close to a year. Its a brutal drug to deal with. Ive still not figured out what to expect each time i swallow a pill. Im on 100 mg, 150 was too strong.
After the first several months a liver doctor at Yale sent me… Read more

I too have a terrible problem sweating.  I worked outdoors for 53 years and never broke out in sweats as I do now.  I awake some mornings in the bed sheets look as though water was poured over me.  The first time it occurred I freaked out thinking I wet the bed!  

The other day I felt a bit tipsy as I was sweating.   I checked my ox level and… Read more

Have your liver checked I’ve never been a drinker but now I have cirrhosis

I’ve been on ofev for several  months now.. I had no reaction for the first two weeks than all hell  broke loose.  I was told to stop for a while.  My dr suggested 100 mg instead of the 150.  For about 2 weeks I was vomiting and diarrhea.  It slowed down, but stomach problems.   Dr increased omeprazole to 40 mg.  It helped but not a… Read more

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… 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… Read more

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

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… Read more

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

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… Read more

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… Read more