July 26, 2022 at 2:12 pm #32732Cecil ZlotnickParticipant
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.
July 27, 2022 at 8:16 am #32748Norman WendthParticipant
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!
July 28, 2022 at 2:01 pm #32759MillieParticipant
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.
July 28, 2022 at 5:54 pm #32765viola conklinParticipant
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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