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Recommended dosage from some pulmonologists is 801mg, 3 times a day.
I cannot tolerate the side effects, particularly dizziness, nausea and headaches at this high dosage but at 534mg taken 3 times a day, I tolerate the drug very well.
My question is whether the lower dosage is adequate to still slow the progression of PF sufficiently.
Any answers and people’s experience would be a great help.
Cecil Zlotnick
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We’re all different, but I understand that lower dosages still slows IPF’s progression—just not as much. It’s still worth it.
Also, some of us develop tolerance for the medication more slowly than others. If I were you, I’d still keep trying to reach full dosage, just slowly and cautiously.
Hand in there!
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I’m on Ofiv but started very slowly so my body could tolerate it. Optimum dose is 150mg twice a day. I started with lower dose of 100mg twice a day and stayed on it for 2 months. No side effects. Then, I took 1 150mg pill in the am and 1 100mg pill in the pm (12 hours apart). Still no side effects. Did this for 2 weeks. Then I moved up to the 150mg twice a day. The first 3 days I had diarhhea and on the third day I threw up twice. After the third day I have been fine—-no side effects. My body seems to be tolerating it very well. Of course, I think diet is a big factor. Eat healthy. I have become very gassy—-that is, farting. And do they stink.
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I too was on Esbriet but could not tolerate at any dose. I was very sick with nausea,diarrhea and terrible headaches. My Pulmonologist discontinued it.
I am now on OFEV 150 mg q 12 hours and tolerating well,just on day of vomiting and that so far is it. I think diet with protein before pill helps, I eat some low salt turkey and a piece of bread 20 min before takinf the Ofev.
I too have noticed an increase in flatulance and very smelly!
Hope this suggestion about food helps and timing of pill after eating.
Good luck with your journey
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Joing in better late than not at all!
I’d been on Exbriet for 3 months & had no side effects until recently. My doctor cut me back to 2 pills 2x’s a day but the lack of energy & dizziness only improved a bit. I asked him if I could take a break. It’s been 10 days & I’m not feeling any different – dizzy, no energy basically still. He has ordered by the Ofev but I’m not starting it until I can see if I do feel better off the Esbriet after 6 weeks (my next appt) or not. If there’s a big difference in how I feel, I may try the Ofev. If not, well – the devil you know is better than the devil you don’t know.
With the Esbriet, the only food restriction is grapefruit juice. With the Ofev, its spicy foods, high-fiber foods, milk or milk products – which I get most of my protein from yogurt, cottage cheese, cheese, etc. Not sure if I want to have that many dietary restrictions.
Any feed back / experiences?
Thanks – Karen
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I have been in both with side effects on each. OFEV was the diarrhea which restricted your social life and outside activities. Changed doses and not much better. Switched to Espriet and 9 pills a day couldn’t sit in the sun to watch grandson soccer or in our living room with the sun shining. Dizziness, nose & eyes running, feeling poorly overall. Have just gone off it and feel better already but still a little dizziness. Will be discussing with pulmonary doctor next week but never been sure whether the medications were working. Taking zinc just in case that helps. I will also be looking at getting on another trial. Always hopefully.
Have a great day
Norm -
I have been in both with side effects on each. OFEV was the diarrhea which restricted your social life and outside activities. Changed doses and not much better. Switched to Espriet and 9 pills a day couldn’t sit in the sun to watch grandson soccer or in our living room with the sun shining. Dizziness, nose & eyes running, feeling poorly overall. Have just gone off it and feel better already but still a little dizziness. Will be discussing with pulmonary doctor next week but never been sure whether the medications were working. Taking zinc just in case that helps. I will also be looking at getting on another trial. Always hopefully.
Have a great day
Norm -
I started with the 3 pills 3x a day now on the 1 pill 3x a day no problems that counter the benefit of slower progression of the condition. I had some nausea at first until I figured out how to take the pills with food instead of before or after eating. I get occasional dizziness but always contribute it to dehydration, a little diarrhea sometimes but more from what I eat, taking magnesium and zink helps as does c, D3 since I can’t go in the sun, B12 liquid since I am too old to absorb the pill form, I have been hanging in for several years over the prognoses so I guess I will take the small discomforts.
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Dear Cecil, When I began taking Esbriet 2 years ago, I was assigned a nurse who gave great advice about diet and managing side effects. Genentech assigned the nurse and she was a lifesaver. The side effects subsided after about 4 months and I am managing very well now. I feel good after being diagnosed with IPF three years ago. Still not on oxygen and I can walk 2 miles, four times a week. I suggest giving Esbriet another try, and ask for a support nurse to help you with side effects.
Debra Lowder
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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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I was 68 years old when I was diagnosed having IPF on August 17, 2018, and started titrating Esbriet January 12, 2019. The doctors were looking for something else (which they did not find) when they gave me a CT Scan and found the early signs of IPF when reviewing my results. I didn’t sense or feel any symptoms at that time, and still do not; I am not taking supplemental oxygen. I’ve been on Esbriet for about 3.75 years. My recent PFT summary (10-13-22) shows my FVC @ 3.66, my FVC% @ 70, my DLCO @ 20.31, and my DLCO% @ 53%. My side effects from Esbriet have been sun sensitivity, some dizziness, and some lethargy for about 30 minutes after taking the 3 pills. All livable conditions, considering the alternatives.
I was worried about the 3 to 5 year lifespan reported on too many websites. But believe I’ll be around for a good many years to come.
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