Passing along what is working for me.

[alex-m]

I have been on Ofev for about 6 weeks now and haven’t suffered any side effects I can put down to Ofev . Prior to starting I was getting depressed just thinking of the side effect especially diarrhea. Changed to low fibre and extra protein but now back to normal eating, my stool hardened up a little and bit irregular but ok.I’m interested if any one has had blood thinning issues or troubles with incisions like skin cancer removal,I had bad nerve pain, bleeding and infections. Considering I’ve had many removed without problems.

Alex

[elconquistador]

Hi Alex!

I take Plavix and an aspirin every day due to a prior heart attack. It worried me a bit when I heard that Ofev also thinned blood. I’ve been on Ofev about 2 weeks now and I have noticed slightly more bruising than what I had with Plavix alone.

I haven’t had any surgery yet but your experience may be in my future as I will have a defibrillator replaced in a year or so.
The only advice I can offer is to make sure you let your doctors/surgeons know your experience so they can adjust to make you as comfortable as possible. Stay strong Alex and best wishes!

[brian-davy]

I have been on Ofev  for the past 3 years ,was initially taking 150 mg twice a day was ok for the first 2 years then went down to 100mg  and its easier on the stomach

I am pleased to say that my last C T scan showed that the progression had slowed

Also taking Gabapenton for my cough, also seems to help

 

[kris-manian]

Hi Jeff thanks for sharing valuable information. Are you still continuing with Plavix with Ofev? Is it working for you?

I am going to have stent put in this week and will be on Plavix along with Ofev. So would like to know your experience.
thanks

kris

[bill28334]

Been on OFEV for over two years.
No side effects but I am on a low carb (25-50 per day) program.
Works for me.

[allan-byron]

Hello Jeff,

I wrote down what you eat, and may follow it. Thanks a lot, and best of health.

Allan

[Thomas Johnson]

Hey Alex,

 

At 74 I tend to bruise pretty easily, but since I started OFEV in January, it’s been ridiculous!  Plus, my skin seems thinner and breaks open frequently…and more bleeding, too.  Not sure if it’s the OFEV or one of my many other medications.

UPDATE:  I copied this from the OFEV web site:

“OFEV may increase your chances of having bleeding problems. Tell your doctor if you have unusual bleeding, bruising, or wounds that do not heal. Tell your doctor if you are taking a blood thinner, including prescription blood thinners and over-the-counter aspirin.”

Tom

[Thomas Johnson]

Hey Alex,

 

At 74 I tend to bruise pretty easily, but since I started OFEV in January, it’s been ridiculous!  Plus, my skin seems thinner and breaks open frequently…and more bleeding, too.  Not sure if it’s the OFEV or one of my many other medications.

Tom

[ping-xu]

Hi, Jeff, thank you for sharing your experience with Ofev. I am so happy that you are not experiencing any side effects and hope that it continues this way. I was diagnosed at about the same time as you and we are both from Indiana! It is very nice to see someone on the forum that is close!

[elconquistador]

Hi Ping!

It is nice to know there are others in the neighborhood on the forum. Maybe someday my wife and I could meet with you and your family for dinner or something.

I hope you are getting along as well. Stay tough and best wishes!

[mary-ward]

Thank you all for sharing

it means a lot to me

as a nurse i am always interested in the whole picture

we need to continue to stay strong and support each other

again

thank you and take care

[mooses3]

Alex-

i was diagnosed with IPF in 2018. I began taking Ofev shortly after diagnosis. I had a Moh’s procedure for basal cell carcinoma on my scalp, 12/2020. I’ve had crazy nerve pain and other unexplained symptoms. The wound has been slow to heal and my scalp is still numb. I get terrible migraines as well.I had no idea that some of this may stem from the Ofev. I’ve also had plenty of skin cancer removed prior to Ofev without incident. Thank you for your post! I will research this. Marsha

[robert-m]

I started taking OFEV 150 2x per day in April 2018. Most serious side effect was violent diarrhea 2-3 times a day.  I had never had an issue with that and did not know how to deal with it.

Took many medications on doctors advice but to no avail. Last year, early 2020 started with Immodium Gelcaps, not the generic.

One a day started to help, about a month later still some issues, doctor said take one in morning and one in evening if needed.

I cannot say enough what a relief it has been not to have to schedule my daily travels around where the nearest clean bathroom would be. Especially after covid hit and many were closed.

I am not advising anyone to take it only that it works for me 95% of the time. It is on amazon, I  think $11 for 24.  They are a little difficult to open each one but worth the effort (for me).

Best of luck to anyone with this nasty side effect.

 

[mack]

Hi Robert, I’ve been on Ofev 150 twice a day since 5/27/21 and have very serious diarrhea every day. So I’ve stopped taking since last Saturday and am back to normal. The Ofev stopped my cough and helped my breathing. I have tried the immodium gelcaps and they didn’t work either.

any other ireas ?

[karen-boettin]

Have your Dr lower your dose..I had too.

[joan-thorkelson]

My dose was reduced –

[joan-thorkelson]

Thanks for your tips – I also vomit from time to time and it is because I take OFEV without enough in my stomach. I like the idea of small meals and I shall try to do what you do.

[mike-mccutcheon]

I take 3,000 mg Cellcept and 40mg prednisone and 6 Esbriet 267 mg per day. Had serious diarrhea but started Imodium a week ago and it went away

[joe-hick]

Started taking OFEV a few days ago. No issues so far, but have a liver disease that needs to blood tested once a month. I’m hoping I can continue.

[Augusta Adkins]

I started taking Ofev 3 1/2 months ago with no side effects. Then 2 weeks ago started nausea, major loss of appetite, and weight loss. My doctor had said a lot of his patients don’t have side effects until after 3 months. Now I am trying ways to get pass this. I sure miss the easy path.

 

[joe-hick]

Started just 5 days ago and finding pain in my liver area. I do have liver disease,  but was going to have it monitored by blood tests. I’m going to stop it now and infom the Dr. I guess what’s worse liver disease or lung disease?

[marianne]

Hi everyone –

I was diagnosed in May 2019.  Began taking OFEV later in 2019.  Take 150 mg 2 times a day.  Very few side effects.  Occasionally, I have a couple of days of loose bowels.  It seems like the OFEV has been keeping my IPF fairly steady until this year.  My last two PFTs haven’t been great.  After PFTs and 6 MN walk in February I started on 2 lt of oxygen on exertion.  See pulmonary doctor on Thursday.  I am assuming from latest 6 MN walk and PFTs tests that doctor will increase amount of oxygen.  6MN walk test was great for distance 1,950 feet (prior one was 1,700) but dropped oxygen level to 84 while on 2 lt of oxygen.  Do not yet need oxygen 24-7 or at night.  I am also coughing more.  Sometimes now coughing up thick mucous.  I also have high blood pressure, acid reflux and Type 2 diabetic.  I have been walking more and going to the gym almost daily.  Try to eat a healthy diet.  Also have liver blood panel pulled every 3 months because OFEV medicine can damage your liver.  So far my liver panels have look good.  Slight decrease in numbers on PFTs this time.  Looking forward to what the doctor thinks of recent tests.  Also had an ABG and HAST to see if I can fly in airplane without oxygen.  Pretty sure the answer to that is going to be no as I dropped my oxygen level under 89 after 5 minutes of breathing air similar to an airplane.

Marianne