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Lnour,

You are correct. My error. It is FVC that I am comparing. Sorry for the confusion. The DLCO was identical in the two comparison PFTs.

Regards, Ron

Hi guys

I have two question how much WEI cost for treatment and second I am on 8 liter of oxygen resting  you guys think Is WEI treatment is good and worth for me. Thanks if anyone can give me some sound advice. I was diagnosed with IPF in 2013 October.

have COPD, Emphysema & IPF I hardly ever cough and have no mucus or phlegm, which is a good thing I think. I have been on Esbriet fora little over 3 yrs and was doing very well after I figured out how to take it so I wouldn’t get nauseousness. Then because of Covid, transportation problems and Dr. being booked solid for months in advance a year w…[Read more]

I have COPD, Emphysema & IPF I hardly ever cough and have no mucus or phlegm, which is a good thing I think. I have been on Esbriet fora little over 3 yrs and was doing very well after I figured out how to take it so I wouldn’t get nauseousness. Then because of Covid, transportation problems and Dr. being booked solid for months in advance a year…[Read more]

Hi all, maybe this is a Q to be posted elsewhere, but just curious about rules regarding being on the transplant list abroad. In Norway you are off the list after the age of 65, and in order to be ON the list you have to be so sick that expected life time is less than 2 yrs. Sees to be different from country to country.

BR Ida from Norway

@6yearvet @lnour It is a forum policy to treat all forum members with respect. We can have disagreements and discourse without being unkind to one another. If you wish to continue this conversation, keep that in mind.

And another note, everyone can and should be doing their own research about treatments and trials, and should take everything in…[Read more]

John,

hang in there. I have been on OFEV for over 2 years and it has helped me for sure.

I changed from 150mg 2x a day to 100mg 2x a day

it has limited

most of the side effects for

me

good luck

John
Does “sats increase by 2pts” mean eg 88% to 90% blood oxygen?

Bill

I am wondering if other OFEV users have the side effects begin a few months after using the drug. I was expecting these issues to begin almost immediately and I was greatly relieved when they did not. I hope this is only temporary for your husband.

I hope you continue to manage the Ofev without the awful diarrhoea.  My husband had been taking it ok for 9 months but now is getting the diarrhoea at some point every day or so.  He takes the Loperamide to help this side-effect but has lost a significant amount of weight and so his appetite has suffered.  Good luck with the medication.

Hello Steve,

Nice to hear from you, I will give you feedback on Wei, and other developments.

keep healthy my friend!!

Allan Byron

@abtron888

Hey Allan,

Nice to hear from you.  I am considering going into my third set soon and will do 3.5 months.  Let me/us know how you are doing in another month or so with the Wei.

Thanks,

Steve

Hello folks,

I have been taking the Wei regimen now for the second time.

First time was almost  a year ago

and used it for 3 months, but didn’t see any

improvements so I stop. I am again using it and this is my 3rd month

and give it another try. If after 5 months I see no improvement, I will discontinue it.

Allan Byron

I am a 72 year old male diagnosed with Mild Pulmonary Fibrosis and Mild Emphysema 2 years ago.  I have started OFEV one week ago today.  Two 150mg per day. Happy to report that I had only one slight diarrhea event 30 minutes after taking my first pill after a large lunch. I was very concerned about the side effects that many folks have. Just t…[Read more]

Hello John,

Thanks for info, have an appointment with my

pulmonologist and will request those lab test for my phlegm. Will also keep u posted for results like you did.  Best of luck my friend!!

Allan