Phil Sasser
Forum Replies Created
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Since you on 600mg, I will assume you have tablets. Start by breaking the 600mg in half for one of your doses (say evening). After 7 days reduce another dose (say morning) to 300mg and try that for a week. Repeat the process until you have either discontinued it altogether or have reached a point somewhere short of discontinuation where you are comfortable.
Phil R.Ph.
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I’ve been diagnosed with IPF for ten years and take Ofev. I get every appropriate vaccine as soon as I can. I’ve never had a problem.
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No, but it will probably slow the progress of the disease.
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I was having sinus problems in 2014 and ultimately was referred to an allergist. During the physical exam when he was listening to me breathe with a stethoscope he noticed a faint sound like the crinkling of plastic (his words). He referred me to a pulmonologist who did a CT-scan and PFT. Bingo! He told me I had 3 years left at the most. I’m still kicking, just not as high as I once did. I think it would be unusual for a primary care physician to pick us on the subtleties of the symptoms. You have to have a high resolution CT-Scan for the diagnosis of PF to be confirmed. I wish you well. May God be with you.
Phil
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Hi Natalie,
I’ve been on the 150mg since August. The fatigue is pretty constant, in the afternoons especially. It just takes more effort to do normal activities. The abdominal cramping and diarrhea is the most difficult side effect that I face. I have a couple of good days and then a day or day and half when I stay in and close to the bathroom. But I’ll accept that if I can have a few more months with my family. I try to stay joyful although sometimes it’s difficult. Blessings to you.
Phil
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Hi GratefulDeb,
The manufacturer, Boehringer Ingleheim, has a patient assistance program. Your pulmonologist should get you their contact information. B-I supplies all of my Ofev at no charge. You have to fill out some paperwork, but they’ve been good to me. Blessings to you as you deal with this disease and the associated side effects of the medication.
Phil Sasser
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Hello, I am new to this forum. I was diagnosed with IPF in 2015 but there is some evidence from an older X-ray (not high res CT) that I may have had it in 2009. Is anyone on this forum that has had IPF that long? I’m just wondering how long I’ll live and how does one even make that projection?
thank you
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Hey James,
I had a similar experience the first time I took it in the fall/winter of 2020/2021 so I discontinued the Ofev. Then last September a high-res ct scan showed more loss in my upper right lobe so I started up again. The side-effects you mention are still there but I am sticking it out. I am careful about when I take it, what I eat with it, and careful in my use of Immodium. It gives me 3-4 good days and a 1 1/2 tough days. I will endure that if it gives me more time with my family. And I try to not let it steal my joy. May God bless you on this unexpected journey.
Phil