• Managing Esbriet side effects

    Posted by kathy-reich on August 10, 2023 at 11:43 am

    I don’t see people’s tips for dealing with Esbriet – hiding in long threads? I have been taking Esbriet 801 mg 3x a day for 8 months.  I wish someone had told me these things (but maybe they are not true for everyone?):

    1. The side effects do diminish over time. Food was so revolting, especially breakfast, for 6 months! Pink bismuth products before eating, and antacids after, helped some. Now I’m very seldom hungry, but eating hardly ever makes me feel sick.
    2. Eat a real meal, not a little snack, with your pills. Too little food will leave you feeling dizzy and/or nauseous. My pharmacist suggested at least 300 calories equals a meal, but for me about double that is needed, including carbs and protein. You’ll know within 15 minutes after a meal whether you ate enough. If not, eat some more.
    3. Don’t swallow your pills with hot liquids. I think soup, coffee, tea, etc. might melt the coating on the pills(?) and make me feel very sick. Finish your hot liquids before eating solid food and taking your pills.
    4. I was suffering constipation despite eating more and more fiber. Then my pharmacist said Esbriet can slow your stomach emptying. Therefore, the high fiber was making me feel very sick and constipating me. Eliminating whole grains and eating only small amounts of fruit and vegetables (along with protein and carbs) made me feel so much better!!  A low-fiber diet is not healthy in the long term, though. As side effects diminish, I am slowly increasing fruit and vegetable intake.
    5. Drinking water tends to make me feel sick. Taking very little during a meal, and dragging around flavored water to sip all day, works for me. Also, milk is usually more tolerable than water.

    phil-ryan replied 6 months, 3 weeks ago 1 Member · 1 Reply
  • 1 Reply
  • phil-ryan

    Member
    August 10, 2023 at 5:06 pm

    I’m 77 and have been taking Esbriet (801mg 3Xday) for several years now and have no noticeable side effects.  (I also use Tyvaso for Pulmonary Hypertension.)

    I always make a point of taking it with meals, although my breakfasts are not particularly heavy (a couple of croissants and a cup of fruit and OJ).  I do take a couple of prunes each morning and 35 mg of senna at bedtime to help with constipation, but that’s about it.

    On the plus side, I’ve been living with IPF for over 10 years now and am still feeling pretty healthy and able to go about my daily business.  That prediction of 3-5 years to live surely has to be amended.

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