[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 possible.

By the way don’t believe all those horror stories about side effects.  The most common one is diarreha.  Just make sure you have something to eat (a muffin for example) before taking the medication.  If it turns out you have to stay at 100mg and not 150mg, so be it.  Good luck and let us know how you get on.

[Bob]

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 pill and I have never had a problem with nausea or, with one exception, any other side effect.  The exception is of course diarrea. By digestive I assume you mean diarrea. You may never have a problem but if you do you may be able to tolerate it. If not your physician may drop you down from 150mg to 100mg. That what mine did.
Hope this helps.

[Bob]

Good luck Michael.  You will be fine.

[Bob]

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.

[Bob]

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.

[Bob]

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

 

[Bob]

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

[Bob]

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.

[Bob]

Charlene, the forum seems to be dying.

 

[Bob]

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 they are not allowed to do it.

[Bob]

Hi Thom:

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

[Bob]

Hi Charlene:

Thanks for your comments. California?  You get around.

[Bob]

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 including golf at least twice a week in summer here in Ontario and 3 times a week last Winter in Florida.  I refuse to let IPF or OFEV rule my life and intend to carry on in that vein.  You find find Charlene and the rest of the gang on here a good bunch and we try to assist where we can.  Good luck and stay safe.

[Bob]

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 a waste!

Take care of yourself.

Bob

[Bob]

@sarvpunj

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.  Like charlene I am on Ofev 150 and the only side effect is generally mild diarrea.  So keep trying to convince her to try Ofev on its own.  Good luck.

 

PS Charlene: I see the developers solved the scrolling problem.  Great!!

[Bob]

@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 when we saw the number of cases in the US climb from 5800 on March 17th to 13000 on March 19th we decided it was time to get out of Dodge.  I won’t get political but that country is in for one hell of a time ahead.

As our health and government officials keep emphasizing, we are all in this together and staying together (at the appropriate physical distance) we will overcome.

Take care everyone.

Bob

PS is there any chance you could get the developer of the site to jig it so when we log in we don’t have to scroll all the way down the page every time?

[Bob]

Stay well everyone.

[Bob]

Carol:

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

Bob

[Bob]

@caroldyck

Hi Carol:

I too am Canadian and live about an hour and a half east of Toronto.  I’m 81 and was first diagnosed in 2012.  Compared with others on here I didn’t experience the usual breathing problems or other symptoms and as a result I didn’t go on OFEV until July 2019 at the 150mg dosage.  Could you comment on why you didn’t go on OFEV until recently?  In my case I fought going on as the side effects scared me.  Then my GP said to me:  “Bob if I told you the possible side effect from Tylenol, you wouldn’t take that either”.  So I went on the medication and with one exception have had good tolerance.

I agree with Mark’s comments to you and you are off to a good start.  The one exception for me is diarrea and it is the most common side effect experienced by folks on this Forum.  In my case i’m not running to the bathroom 10 times a day and as such, while it is diarrea, it is by definition mild.  I use liquid Imodium and take 7.5mls WITH my OFEV.   It might be all in my head but I feel this has the effect of moderating the diarrea.  However PLEASE consult you doctor before deciding to do this.  Should my diarrea get worse, with the agreement of my doctor , I come off the OFEV for  a few days to allow the bowel to settle down.

I’m glad to hear you walk as do I but so far I haven’t needed oxygen.  Keep that head held high and as Mark says, ask us anything and if we can help we will.

Bob

[Bob]

Hi Charlene:

This is a test to see if my post posts…LOL

[Bob]

Hi Charlene:

Been away…actually up in Hamilton Ontario for a few days.  Used that new no frills airline Swoop owned by WestJet.  Went through the worst nightmare flights due to weather and maintenance problems.  Not all Swoops fault.  But Hamilton airport is a disaster for passengers.  Will never use it again if nothing changes.

 

[Bob]

Hi Marie:

I hope you get this. I received a friend request from you but i’ve been away and when I tried to acknowledge it, it had disappeared.  If you want to send it again i’ll be glad to accept.

[Bob]

Good luck Manzurul.  You will be fine.

[Bob]

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