[Thom]

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

[Thom]

@marianne please email me.

[email protected]

[Thom]

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 lot.

Thank you Charlene!  She suggested I take 1/2 tablet of imodium with ofev.   Since than no problem.   I wake up, eat banana, take med.  Hour later breakfast  and I’m good to go.  And I dont mean to bathroom.  Thanks  Charlene

[Thom]

Also a skin rash.  No itch.  But it is there on my wrist

[Thom]

Hmm. I’ve been balding since my early 30s.   I’m 71 and still have a decent crop.

One thing I have noticed that made my wife jealous . The once hairy legs I had are now as smooth as a babies you know what!  It happened  fast so I’m assuming it’s from ofev.   Most of the side effects are diminishing so it seems.  Charlene suggested imodium, 1/2 tablet with thr ofev.  Since than the stomach isn’t churning.  The diarrhea has nearly subsided and no more vomiting!  Hurray  for that!   But all the pressure on my stomach seems to have caused a hernia.  The pain is unbearable. I hope to see a surgeon next week.   My pulmonologist says unless its absolute not to get surgery.  His worry is infection.  But I’ll take that risk. I need to keep moving.  Right now I barely walk or stand.

Another side effect is I now have cirrhosis of liver and enlarged  spleen.   I’m not a drinker. Never have been.  I enjoy a beer or wine once in a blue moon, but now it’s a thing of the past

Zero tolerance from now on.  But my thinking is what is the worst that can happen?   For my wife I most likely will abide.

I’m sure like most here we’ve  never been sick.  But now this.  One day at a time.

Thom

[Thom]

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 sure suspected I was having a breakdown.  I did keep it together through therapy.  I was so against going, but 30 years later I’m still here.  Once again I’m challenged with unknown territory, except now I’m 70, and see things a different way.

Talking is the best thing we can all do.  I understand your sorrow and sadness.  I just wish I had something more to say.

You have good people here, and you hold us together.

Thom

[Thom]

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. Thank you Tom

[Thom]

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]

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 the units were not.  How much difference does it make?  A guess a pharmacologist would know.

Thom

 

 

[Thom]

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

[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 ofev yesterday for the first time. My doctor recommended I go for a few tests before I begin taking the medication. I am happy to say that’s so far I feel okay no stomach cramps no diarrhea no vomit although I’ve only swallowed 3 pills so far. The medication is just over $10,000 per month for 150 mg. Fortunately my insurance is picking up the tab. Ironically I changed Insurance just a few weeks before I was diagnosed. I will keep everyone informed as to how I’m doing it’s nice to have a place to go.

One question for anyone on the site there seems to be a lot of advertising and I’m curious who owns and runs this website.

Thank you all for listening warm regards. Thom

A short PostScript. I saw my doctor the other day and mentioned to him some of the different remedies that are mentioned here. I mentioned the cold laser serrapeptase and also collodial silver. His reply was unless it’s FDA approved he is not interested, it’s about what I expected. so I told him when I return don’t be surprised if I am wearing a necklace made of garlic. I’m sure my grandmother would have approved!

[Thom]

I just posted something and now I think it disappeared. Oh wait a while and see if it reappears

[Thom]

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 told you I would let you know why after almost 3 months I have not started  Ofev yet.  When I first discovered I had IPF the first pulmonologist immediately prescribed Esbriet.   Absolutely no tests were done.  The only thing I was told was I was terminal and would die in 3-5 years! I needed another opinion. I decided to go to Yale because its nearby.  After several hours and many doctors I was prescribed Ofev.   And was told to take it as soon as it arrived.  That’s chapter 2. Chapter 3, I decided to find another pulmonologist in my town.  The problem today is doctors belong to large groups compromised of many doctors.  I did not want to find another doctor in the same group as the one that told me I’d be dead soon. So like many others I’m sure, I looked on the internet to see if I could find another pulmonologist. Luckily for me I found two doctors belonging to one group less than 5 minutes away from my home. What’s the last thing to lose I figured I would try and see how this doctor was. He immediately explained everything to me about the disease that no one else had explained to me. He then began all kinds of breathing tests which included a treadmill as explained above and another 6-minute walk test. He told me to bring the medicine in ofev, he wanted to look at it. He also told me to bring in the literature that came with it. I wasn’t sure where he was going with this. My appointments are scheduled days apart when I went back to see him he said to me do not start ofev until I do some more testing. That was two weeks ago I have since been to the hospital for an echocardiogram an EKG and was prescribed something for acid reflux. Tuesday I was told why he did not want me to start the Ofev.  The doctor told me he had two patients that had minor heart attacks  shortly after beginning  Ofev.  He had read somewhere  that it was a possible side effect.  Although I am about 10 years younger  than the others (I’m  70), he felt he ought to test my heart first.  Lucky for me! I have an enlarged heart, he so far has not detected  any blockage,  veins and arteries seem okay.   But I will be going for a heart catherization next week to be certain  I have something going on that the echo or cardiogram missed.  He believes my labored breathing  may be caused more from my heart  than the lungs.  At this point I’m not sure what the hell to wish for!  But lucky for me that the chapter 3 doctor held me off the Ofev for a little while.  I’ll try the ox at night and see where I wind up.

Thanks for listening to my rant.    Thom

 

 

[Thom]

My name is Thom.  But for now call me confused.  I went to Yale medical center and was prescribed ofev

I’ve had the med two weeks but was advised by my local treating  doctor not to take it yet

I’m not sure why

So who do I listen  to!  Reply here or to me.  I’m ok either way.   [email protected]

Thanks for listening!