Bob

Hi Pamela:  I agree with Millie that you should consult your Doctor about taking OFEV out of the capsule.  But I do know about gagging.  I have one fairly large pill that gives me a problem.

It is possible that Ofev might be delivered in another form (for example liquid).  I haven’t heard that there is another form available but it is pos…[Read more]

Rand:

I’ve been on OFEV since 2015 and I see you are getting some good input from Charlene and John.
Your diet is very similar to mine starting with oatmeal in the morning. My only advice is to make sure you have something to eat before taking OFEV. After breakfast is no problem. I have my second pill around 9.30pm. I eat a muffin ahead of taking…[Read more]

Good luck Manzurul.  You will be fine.

Good luck John.  You will be fine on OFEV at 100mg.

Good luck Michael.  You will be fine.

Hi Joy:

For diarrhea I went from 150 to 100 over a year ago.  It solved the diarrhea problem and as far as i’m concerned it is just as effective.

Hi Charlene:

Want to wish you a Merry Christmas and a happier new year for all of us.  I’m scheduled for a PET Scan on Thursday, the result of an indecisive biopsy finding on a Node in my right lung.  It is very small but we need to define it and get on with any necessary treatment.  I feel fine and i’m very confident.  Stay safe.

Steve:  They certainly have been silent but I still chose the wrong words.

Charlene:  Whew! I thought I might get banned!!  Thank you.

Charlene:  My sincere apologies for definitely using the wrong choice of words.  My intent was only meant to refer to the low level of postings in recent months.  I’m so sorry for giving you and others the wrong impression.

Charlene, the forum seems to be dying.

Hi Thom:

They won’t allow that here in Canada.  I think its a tremendously expensive waste of money.  We are approved here for OFEV under a special government program so it doesn’t actually cost individuals anything.  Nevertheless given the packaging of this product, unopened packages should be taken back by the Pharmacy and redistributed.  But…[Read more]

Hi Thom:

Thanks for the info.  Can I ask where you are?  I’m in Canada.

Hi Charlene:

Thanks for your comments. California?  You get around.

Dear Bob

From another Bob.  I like your positive outlook.  I was diagnosed 8 years ago last February but I am very fortunate as I don’t exhibit the usual symptoms of shortness of breath etc.  Have been on OFEV for 2 years in June and apart from diarrea (see my post a little earlier today) I have had no problems.  I carry on a normal life inc…[Read more]

Hi Charlene:

I had to scroll down today.  Sa La Vie.

The diarrea won!   Battled this one for 18 months but it seemed to get more frequent and i was coming off OFEV for 6 days at a time every 6 weeks.  So Doc has taken me off for 3 weeks and will restart me at 100mg.  Now i have to dispose of a full one and a half months of 15omg capsules.  What…[Read more]

@sarvpun

Hi sarvpun, I echo everything Charlene has said.  In your fist posting you said your wife was taking both Esbriet and Ofev.  I know there has been some trials of this combination but the last i read was there was no significant advantage.  Also i have to assume that the side effects of taking both medications have to be greater.  Lik…[Read more]

@Charlene Marshall

Good afternoon Charlene and everyone else who might be tuned in.  We all find ourselves in the middle of what many describe as a nightmare and given our respective underlying lung condition, we have to take extra caution.  As you know my wife and I winter in Florida and were not scheduled to return until April 25th.  However wh…[Read more]

Stay well everyone.

Carol:

A correction to my earlier post.  I started OFEV in July 2018 not 2019.

Bob