[Bob]

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 Gloustershire and emigrated to Canada after 10 years.  Been in Canada for over 50 years.  I’m afraid i’m a bit of a fraud as far as IPF is concerned.  Diagnosed in 2012 but I think it was there in 2008.  CT Scans and Lung Function Tests say I have it but I have never had any of the main symptoms (shortness of breath and chronic dry cough).  I went on OFEV in July after resisting it due to my lack of symptoms and side effects.  So far nothing major of a negative nature.  So when I hear of others like yourself and their experience I really do feel a fraud.  I have read quite a bit about it and if I can help others i’m more than happy to do so.

Regards

Bob

[Bob]

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

[Bob]

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 it wrong last time: it beins with a G and not a C.  but remember only get the basic one.

Yes Glenda it would be very interesting to hear what the manufacturer says.  Also can you tell us where you are from?  Charlene and I are both in Canada.

Regards

Bob

[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 you by the OFEV support program?  If so I would definitely discuss it with them. If not i’d go direct to the manufacturer, Boehringer Ingelheim.

As far as the joint pain is concerned I have taken Clucosamine Sulphate for years.  Its not a drug but a health food supplement that you  can buy in Walmart or any drug store or health food store.  Walmart is the cheapest.  I only take the basic form and not the form that contains other other additives like Conglotin (sp) as their effectiveness is questionable and it makes the basic form much more expensive.   I have no joint pain whatsoever and i’ll be 80 in February.  I believe the recommended dose is 2000mg a day to start and then 1000mg a day.  You can look it up on the internet.  It’s not immediate but will take a month or 2 to kick in.  Hope this helps and stay in touch.

Regards

Bob

[Bob]

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

 

[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 considerable expense to fight it.  QCs don’t come cheap!!  That said I still encourage you and your friends to appeal.

[Bob]

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.

[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 they will cover but they use the phrase “may provide coverage” where you are discharged from a hospital and as a result of injury.  Here is another site you might find of interest:

https://physioinmotion.ca/blog/ohip-and-physiotherapy/

I also spoke to a Travel Insurance carrier and to WeFixU who I go for a Chiropodist and each didn’t outright say the door is closed.  Therefore it seems 2 options are open to you:

1)Detail all of your expenses to your US lawyer and seek reimbursement as part of your settlement and/or

2) File an Appeal with OHIP for their consideration by their Appeals Committee.

Again I have learned something from this little exercise.

Regards

Bob

[Bob]

@Zach Aldman

Thanks Zach.  Have a good weekend.

[Bob]

@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

[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 in 2001 and bang!, you tell me about the serious accident you and other family members were in last year.  What an awful experience.  I hope you had Emergency Travel Insurance and if not is that perhaps what the fundraising you mentioned is about?   Good luck with the final outcome of that settlement.

I’m sure your trip this time will be eventful for more pleasant reasons.

I’ll let you know the outcome of my visit on Monday…….I know exactly who is leaving town on the 15th, the only unknown is will it be with my Doc’s blessing!

Take care and god luck with the fundraising.

Bob

 

 

 

 

 

 

 

 

 

[Bob]

@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 and Steve and I were joking that i’d need an extra suitcase just to ship my supply to Florida.

Had a PFT last week and see my Doc on the 10th.  I’d normally be in Florida already but had to hang around to be sure my liver didn’t leak or something.  We have all arrangements made to get out of Dodge on the 15th and only a very solid medical reason is going to keep me from not following through.  I refuse to allow this condition or the medication to control my life.  Next year my Doc better get organized because i’m outta here November 1st.

Enjoy your trip to the Big apple.  Last time I was there was July 2001.  Took a bus tour that included the WTC.  A few month’s later 911 happened.

Regards

Bob

[Bob]

@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 requirements), I doubt I would be on it.

I noted 2 postings in particular.  Jean Benford was looking for assistance in paying $2300 a month.  Jacki Baum provided information about 2 support outlets so hopefully Jean saw this.

For those of you whose diagnosis is new  I would encourage you to educate yourself about IPF as much as you can.  There is a wealth of information on the disease on the internet and a myriad of articles on interpreting Pulmonary Function Tests (PFTs).  There are also a series of educational videos on You Tube on PFTs.  Also keep a positive attitude; don’t assume your condition is going to worsen because as Charlene has pointed out in an earlier post, IPF effects people in different ways.  I was definitively diagnosed in 2012 but evidence shows I may have had it since 2008.

So as the say in the UK where I was born, “keep your chin up” and good luck to all of you.

 

 

 

 

 

[Bob]

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.

[Bob]

@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 Esbriet.  I’m in Canada but winter in Florida.  I’d need another bag to carry my supply.

[Bob]

@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 otherwise of the combination but a note to Pulmonary Fibrosis News could determine if their has been a study along these lines.  There has been no mention of the cost of combining but it is likely to be very very high.

https://pulmonaryfibrosisnews.com/2017/09/12/trial-shows-that-ofev-and-esbriet-combo-is-as-safe-an-ipf-therapy-as-its-individual-components/

[Bob]

Hi Charlene:

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

Happy New Year to you too!

[Bob]

Hi Charlene

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

Later

Bob

[Bob]

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 clinic(s)?  To my mind (the fuzzy one again) you were involved in an accident and it is co-incidental that it happened to be in NY state.  You are not receiving rehab in NY state, which we know they wouldn’t cover, but here in Ontario.  Hope you won’t mind but i’m going to pursue this a bit more and will report back my findings.

Reading your experience leading up to your diagnosis of IPF, you seem to have had a rapid onset of the condition given the sudden change in your well-being.  Where are you at now?  Do you have the usual symptoms?  What was your last FVC reading on your lung function test?

You asked me to let you know the outcome of my LFT and it was all very positive.  So much so that my FVC went UP 11% from 94% to 105%.  This is why I sometimes feel a fraud when I read and hear other peoples’ experience and why my wife and I have questioned my diagnosis.  But i’m not complaining.  As a result we have the green light to leave for Florida on Saturday.

Will get back to you on my OHIP research.

Regards

Bob

[Bob]

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 rehabilitation costs but i’m not clear on where they stand when the accident occurred in New York State.   Generally there is a distinction made between what OHIP covers and what the Auto company should cover, and Rehabilitation falls into OHIP’s bag.  If they won’t cover it because the accident happened outside Canada then clearly (to my fuzzy mind) it has to be part of your settlement as an ancillary expense under “pain and suffering”.

I’m sure you or your lawyer have looked into the ins and outs but since I spent 45 years in the life insurance business, the topic intrigues me.

Elaborate if you feel inclined.

Enjoy your trip

Bob

 

[Bob]

@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 any future need to buy that extra suitcase.  Have a good weekend

[Bob]

@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 out that 30 seconds entirely.  I don’t know if that’s what I ran into but if it was, the more appropriate action for the tech folks to take would to give an explanation for the error and tell you what action you should take, or not take.

I rewrote my posting and tried to send it to the private exchange we were having and this time a message came up saying “you have posted an inappropriate word”  Duh!  This time I took a copy and transferred it to Word but reading your comments about formatting i’m afraid makes taking a copy redundant since as soon as you put it in word and save it the formatting will be changed.  I’m in touch with Joe Pierce in an attempt to solve this latest issue.

I notice as I type this that my font looks entirely different to what I see as the end product of other posts so I don;t know if this is an issue.  I’ll find out when I try to post this.  I have made input to a numbers of forums.  None have the protocols that this one seems to have.  You type and you hit “Submit” and there are no Tags or formatting or spam delays.  Someone has reinvented the wheel.