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… 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… 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. … 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… 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. … 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. … 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… Read more

Stay well everyone.

Carol:

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

Bob

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… Read more

Hi Charlene:

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

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.

 

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.

Hi Charlene:

We are here until the end of April.  Due back in Ontario on April 27th.

Happy New Year to you too!

Hi Glenda:

Thank you for giving us your background information.  It is very helpful to know as there are usually differences on the handling of OFEV in different countries and I know there are definite differences between Canada and the US.  I was born in Belfast N.Ireland, went to live in London at age 16, got married to a gal from… Read more

Hi Charlene and Glenda:

Rain long gone and today it is 80F and these temps will continue until about next Thursday when the next Front s due to drop us back down into the 60s for a few days.  That’s typical Florida winter weather, particularly in an El Nino year.

Yes try Glucosomine.  My wife also uses it and swears by it.  By the way I spelt… Read more

Hi Charlene and Glenda:

I copied the drug manufacturers name from the internet so that explains all that gobilty-gook before the name.  No I wasn’t drunk!!

Bob

Hi Charlene and Glenda:

I have to admit you are both the only people I have heard of who have experienced joint and muscle pain.  I have just re-read to booklet that we are given in Canada with first OFEV prescription and there is no mention or even a hint of joint and muscle pain.  Glenda Have you got a support group and a nurse assigned to… Read more

Hi Charlene:

Yes it is warmer here even if it has been wet.  We are 2 hours straight west of Orlando.

Those deary winter days in Canada are what would drive me potty and as far as the cold is concerned i’m a coward.

Hope it brightens up for you.

Regards

Bob

 

Hi Charlene:

I had some experience with filing an appeal through OHIP.  One of the interesting things I found out is that all of their communications are sent via courier.  Also, at the hearing itself, which was via a conference call as I was in Florida, the Chairman or Moderator was a QC.  So they wouldn’t pay my claim but they could incur… Read more

Hi Charlene:

It is warmer down here in Florida but we have had heavy rain since about 2am on Thursday morning and straight line winds and a tornado south of us that damaged 80 mobile homes and took the roof off a detached home.  So not all is great in paradise.  Have  a very merry Christmas.

Hi Charlene

Will write more later.  Just got to the house in Florida.  We don’t fly we drive.  Good uneventful trip.

Later

Bob

Hi Charlene:

Following up on OHIP and Rehabilitation.

The OHIP site is pretty specific on who they cover – seniors and those under 19, as well as those claiming under Workers Comp or under their Canadian auto insurance.  I know you aren’t under 19 and based on your picture I doubt you are a senior.  The site is less specific about who else… Read more

Hi Charlene:

You might be in NYC by now.

Thank you for your detailed reply.  It was as I expected but I really don’t understand why OHIP wouldn’t have covered your rehab, despite the fact that you were not claiming through your Canadian auto insurer.  Did you question your family doctor about this and ask him for a referral to the rehab… Read more

Hi Charlene:

I’ll respond to your total posting a little later but i’m intrigued about the rehabilitation costs you are incurring as a result of your accident.   I’m assuming you have hired a lawyer to fight your battle with the insurance company and any costs you are incurring now will be part of that settlement.  OHIP also covers… Read more

Hi Charlene:

So you are in Ontario too?  Where?  I’m in a small village called Colborne which is situated between Cobourg and Brighton.  If you know the 401, Colborne is where the “Big Apple” is located.

@Steve Dragoo

Hi Steve:

Just as a follow-up to our earlier discussion on combining OFEV and ESBRIET, I just found out today that in the province I live in in Canada – Ontario- our government programme will not reimburse for combining of OFEV and ESBRIET.  I would imagine this is probably the same across Canada.  So that will definitely ease… Read more

@Zach Aldman

Thanks Zach.  Have a good weekend.

@Zach Adman

Thanks for the tip Zack.  Could you comment a bit more on the side effects you experienced and a little more specifics on the improvements you noticed?

Bob

@Charlene Marshall

Hi Charlene:  Boy the things you learn about.  You know you originated this Forum and all the particpants, including yours truly, have given you input into some parts of their lives and their history with IPF and OFEV.  But I have yet to see Charlene’s history with IPF and OFEV.  And then I mention my visit to NYC way back… Read more

@Charlene Marshall

Good to hear from you.  I seem to recall that I read there was a study that showed combining the 2 medications did not indicate any better results that each being taken separately but I don’t know where I read about it..  I have to admit when I saw this whole idea I took it with a pinch of salt.  The cost would be horrendous… Read more

@CharleneMarshall

Hi Charlene. As you will note I seem to be getting my posts through at last.  I note from several participants that they are US residents and I do have empathy with them over the difficulty they experience in paying for OFEV.  If it were not for the fact that our government funds the drug in Canada (with certain qualification… Read more

@Steve Dragoo

I got an article from Pulmonary Fibrosis News this morning. (you can sign up to receive these daily on their website).  They are testing a herbal concoction on mice that is showing some positive results. Stay tuned.

By the way i’m not sure they would ever have a combined pill.  You’d probably have to take your 2 OFEV and your 3… Read more

@Charlene Marshall

Hi Charlene:

I hope this post has more success than I have experienced to date.  This is really intend for Steve Dragoo on his query about combining OFEV and Esbriet.  Here are the results of a study done on this topic and it indicates that combining the 2 drugs is safe.  It does not comment on the effectiveness or… Read more

@Charlene Marshall

Hi Charlene:

I read your article on preventing errors.  As you know my experience was that I composed my post in the box but when I tried to post it, the Error message told me I couldn’t post at that time.  For a Forum like this I think any risk on getting spam is probably very very remote so for my money they should wife… Read more