R. Chris
Forum Replies Created
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I too am sorry to hear of your loss. Also a IPF patient, I additionally wonder, was she taking either of the prescribed meds, OFEV or Esbriet?
Chris Patient
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Yeah, fifteen years? I am now two weeks from 5 years and feel darn fortunate for that. First on OFEV, with some problems that had me switching to Esbriet. Full dose, 801mg, 3X daily. Before not long ago access to either, OFEV or Esbriet, 5 years would had most likely been the end of it all. Fifteen? There must be more to this story.
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Debra; Could you please expand a little further on the diet advice of the nurse? For me, it’s now mostly fruit and vegetables. Multiple fruit smoothie every morning and most often a salad for lunch or dinner. Only grapefruit has been eliminated altogether. Apart from my fruit and vegetable “main course”, I still eat most everything else but in moderation of both incidence and amounts. Nothing seems to taste quite as good as I think I remember. I was diagnosed in November, 2017. Intestinal problems with OFEV arose later in first year, on Esbriet, 3 X 801mg. I tolerate it well, I guess. No headache, diarrhea, nausea but tired, always. A fatigue that never leaves. And definitely a feeling, “brain fog?”, that’s always present. You’re always aware of being on a drug that is definitely not ‘recreational’. Unlike any other, a feeling you can’t describe unless to a person that you know knows the feeling. How’s that for clarity? I’m glad now for being able to just have had a laugh and found some humor in knowing that there are persons on this forum can appreciate the ‘inside joke’. That aren’t saying; “What’s that guy laughing about?”
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Greg,I’m 71 and was diagnosed,IPF, four years ago next month. Was originally taking OFEV but was switched to Esbriet for gastrointestinal reasons. I’ve been on Esbriet now for about two years. I was wondering, Greg, why it was that you quit taking Esbriet after only a couple months. I am not on oxygen yet and do exercise but still can be short of breath from raking leaves or too quickly rolling out the trash bin. Fatigue seems a problem for us all. Never goes away and what I hear others describe “brain fog”. I can always tell I’m on a drug and it’s hardly something one would do for recreation. Like Greg, I’ll still have a drink a couple times a week but when I do, its limit is one. Seems it, brain fog, must be the Esbriet. Wondering if Greg and others experience same. I.e., I know I’m on a drug. Always.
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What are the ages of the deceased and the survivor?
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Got my 3rd shot booster this past Monday morning after applying online the previous Friday with CVS. Pfizer. No problems at all. With either signing on or with side effects. A slightly sore arm the following day was all. I’ll be headed back over in September for the flu vaccine which I’ve gotten every year for several years now. A little background; Male, 70 years old, diagnosed IPF a little over two years now, on 3X801mg Esbriet for almost as long.
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After first an X-ray, then a CT Scan, my pulmonologist scheduled a lung biopsy. That left no doubt. No need for a second opinion.
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I’ve been on Esbriet for a year now. 3X800. I’m just wondering if others feel that the Esbriet further adds to the near, if not always feeling fatigued.