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    • #27534
      Steve williams
      Participant

      Hi guys. I was started on Esbriet last year, but up to the 3 x 800 dose very quickly. Side effects not good. Extreme nausea & fatigue, about 2 useful hours a day. Stopped totally (with consultants blessing); over Christmas, back to normal within a week. In January started again on 3 x 267 daily. Bit of fatigue in the late afternoon but otherwise great! Today doubled dose to 6 x 267 daily. Nausea back, slept two hours this evening. Could this just be psychosomatic?  I’m going to keep varying the dose until I find one I can live with. I drink 3 litres of water daily & only take meds after meals).

      My question is this: is there any benefit on being on a low dose of Esbriet? Say 3 or 4 x 267 daily? Or is that a waste of time? Is it ‘all or nothing’ long-term?Thanks, Steve

      • This topic was modified 9 months, 1 week ago by Charlene Marshall. Reason: formatting to remove code
    • #27541
      Lou Body IV
      Participant

      Steve:

      I was told by my pulmonologist that it is quite common in other countries for people to be on Esbriet but not the full dose. We talked it over and he said tests have proven that a dose of 6 x 267mg works fine for many people. He suggested that as the standard in some countries like Japan. In my case, he asked that I take 6 at a minimum. I actually take 7 and he’s happy with that. I had a big problem with 9 so cut back slightly. In his words, “Take what you are comfortable with but not less than 6x 267mg per day. Hope this helps. Lou

    • #27551

      Hi @stevew

      Really good question and I’d be curious to hear if others have spoken to their doctor about this. I know many patients who are prescribed the other anti-fibrotic drug, Ofev, have a hard time with the full 150mg dose twice daily and are moved down to the 100 mg permanently. That said, I can’t recall hearing from others on Esbriet whether or not they have been been told a lower dose is worthwhile or as effective. Can anyone share their thoughts on this with Steve, if they’ve had a conversation similar in nature with their doctor? I’m also curious to hear! Thanks for writing Steve.
      Char.

    • #27552
      Regina Bolyard
      Participant

      This is a really great question. I will be starting back on Esbriet tomorrow after being off treatment for several weeks. We were trying to determine if I was having side effects due to Esbriet or another new medication. When I discontinued Esbriet most of my issues resolved.

      I learned from genetic testing that I have a CYP genetic variant that makes me clear drugs less efficiently. So I will resume at only one 267 mg. dose a day and titrate very, very slowly. I may not ever be able to tolerate the full dose. My doctor seems to think that some is better than none. I will ask if there is a threshold of dosage below which  she thinks it is pointless. I wouldn’t have thought to ask if not for this discussion.

    • #27558
      Carol Richards
      Participant

      Hi, I could not tolerate OFEV.  I tried for over a year.  I am now on Esbriet.  I, too,  became extremely fatigued.  I spoke to the pharmacist from the specialty pharmacy that I get  the Esbriet from, and he told me that it appears from the study information that a lower dose of Esbriet may be just as helpful as the full 801,  3x’s a day.  I have gone to 7  (267) a day.  Still tired in the morning, but so much better than before. I am trying to get on the Galactic 1 clinical trial through the Cleveland Clinic, and was told I had to be stable with the meds I am taking.  So I have not reduced the amount of my Esbriet any more.  I would like to.  It is very  interesting that in Japan that is the norm.  If for some reason I am not accepted on the clinical trial, I intend to reduce the Esbriet by one more pill (267).  Thank you all for the great information on this site!

      • #30044
        Sue Steele
        Participant

        My Dr. wants to put me incekkcept. I don’t know why? I have not had a transplant. I PF not IPF. Does anyone use that drug? The side effects are really bad or so I read. I’m not sure what I should do. I’m on oxygen but it’s set at 2. I have been told I have pf.

    • #27585
      Sharon
      Participant

      Hi, I stared on Nintedanib last November 150mg twice daily. I had a call from my respiratory nurse middle January saying to reduce meds to 100mg twice daily. I thought this was because of the side effects I was having. Had another call from respiratory nurse yesterday asking me to go to the hospital today for a blood test as my liver enzymes are elevated and that was the reason my meds were reduced. Will have to see now if I have to come off the Nintedanib altogether.

      • #28938
        Bill Carner
        Participant

        Both the Galactic and Galapagos studies were terminated suddenly in February. I haven’t f0und the whole story but it seems they weren’t effective and could be doing some harm. I was in the Galapagos study it seemed clear that I was getting the placebo.

        I was on Esbriet for 5 or 6 months. hated it: insomnia, fatigue, depression. I had been leery of Ofev because of diarrhea being a side effect, but when I cut back to one 801 mg tablet it didn’t get much if any better.  My pulmonologist told me I was getting all of the side effects and none of the benefits of Esbriet and switched me to Ofev, when I asked about diarrhea she said she’d give some meimmodium and guess what, no diarrhea! even with no immodium, and my partner said I was back to my old, fun self.

        • #29121
          John callaghan
          Participant

          Esbriet seems to work by making the lung contents easier to remove.

          I was on 2×2 when my doctor took me off because of liver problems. Lungs are now relatively clear with only a bit to cough up in the morning.

          Expect to go back on it if it gets worse.

    • #27603

      Hi Sharon,

      I’m sorry to hear that! Ofev can cause such yucky side effects, but also some elevated numbers like liver enzymes. Keep us posted on what the doctor says about staying on and/or or coming off. I’m curious to hear.
      Char.

    • #28812
      Steve williams
      Participant

      Sorry guys, appreciate the feedback but had to change my email sovjust read them all!

      • #29742
        Sharon
        Participant

        Hi Charl,

        Sorry I didn’t see your post until now.

        I am now on 100 mg twice a day of the nintendanib and have been for a few months now. Still having stomach cramps and a little bit of diarrhea but nothing I can’t handle. I had my assessment with the transplant team three weeks ago and was so pleased when they said I did not need to go on the active transplant list as I was too healthy ☺️..

        They will see me again in nine months time. Take care xx

    • #28817
      Anonymous
      Inactive

      So has anybody got evidence of a lower dose working or not working? As in disease progression slowing down or not? That info would be very useful

    • #28821
      Jess Schroeder
      Participant

      I have been on Esbriet for over 3 years (9/day, 267 mg). I had a lot of bad side effects the first year and the Doctor had me reduce dosage for a while (twice now). The second time was from itching. Each time I was gradually increased back to full dosage. Fortunately, the side effects are no longer a big problem, I take Hydroyzene for the itching and insomnia side effects, which seems to help. I no longer itch, but have sleeping issues.

      • #29124
        Rob Tyler
        Participant

        Jess; Look into amitriptyline (25 mg) prescription – take one hour before bedtime. A game changer for me with insomnia. ESBRIET nurse shared this tip with me. May need melatonin (3 to 5 mg) also – no prescription.

    • #28824
      Lou Body IV
      Participant

      To All:
      Fatigue is an issue with Esbriet as is insomnia at night. I experience both, fatigue in the day and insomnia at night. The fatigue I can usually handle by keeping very active. I’m convinced the more active you force yourself to be the better you will do. I play golf 4x a week, swim daily, walk, and so on. My pulmonologist, who is, perhaps, the smartest doctor I’ve ever met, has said 6 267mg Esbriet daily is the minimum effective dose. I take 7. I don’t like the drug but I take it. I hope it is working.

    • #28834
      Carlo De Pellegrin
      Participant

      Good morning all,

      I have been on 9 Esbriet since November 2020. I have most I’d the side effects mentioned in this discussion chain. I have no idea about the effects of reducing the dosage would be but can suggest three things that seem to have helped with the nausea and fatigue.

      1. I take the meds religiously with every meal at least 4.5 hours apart and take them one at a time through out the meal. Eat slower then before and space out each pill.

      2. stay outdoors as much as possible. The outdoor  air seems to make such a difference to me.

      3. stay active almost to the point of exhaustion. I play golf four times a week, I’ve become a lousy gardener, I’ve become an unhandy, handyman.

      I still have the lousy Esbriet side effects but not nearly as bad as before.

      GLTA

    • #28896
      Anonymous
      Inactive

      Hi Steve, I asked my father’s pulmonologist this specific question and she confirmed that smaller doses have been helpful for their patients. She mentioned, as an example, that the height and weight of the person might play a roll as a smaller person might not need the full dose to reap the full benefits, so it sounded promising that it is not an all-or-nothing deal with the medication.

      • #29740
        Christine McCann
        Participant

        Carlo, don’t forget to cover up and use sun screen with Esbriet. The rash is very uncomfortable and you have to stop the meds until it clears up.

    • #29032
      Yolanda Germann
      Participant

      This is interesting to read!

      As for here in Switzerland this medication is not very long in use yet.

      We are always a bit slower as others J

      Normally the calculation in doses of medication the weight height and age will be an issue. WHY here not?

      I did ask may Pulmonologist if I coud reduce the medication. She ordered 2 twice 2 of the 267 mg.

      As I have still a lot of the 801 mg. I take Esbriet like that…

      In the morning 2 tabs. at 267 and in the evening I cut the

      the 801 mg.in half.

      I know that is 134 mg less as prescribed. As far as now I am doing well.

      Of course when the box of 801 mg. gets empty I will obey *g*

      Please ask if my English is not understandable as my language is German

      All of you suffering the same symptoms I wish well.

    • #29094
      Steve williams
      Participant

      Update: hi all, thank you for all the replies. Up to to 7 x 267 now and ok apart from need to nap for an hour most afternoons.

      onward & upward!

      regards

      steve

       

    • #29726
      Gail Eiben
      Participant

      Hello my name is Gai, Had an MRI and CT scan for a adrenal gland Nodule On the MRI and CT scan was noted a condition on my lungs and information indicated IPFWith scarring on lungs and also noted by rheumatoid arthritis. I looked up IPF and now Very worried. I just didn’t understand anything with the MRI and the CT scan As just were observations. I made a appointment with a pulmonologist in golf Shores Alabama where I live no no idea what’s gonna come of this. I have read about the costs of the new drugs and there’s some thing I can’t even consider the cost. I have original Medicare and a Medicare program. Would I be Better off with a Medicare advantage plan or stick with what I have. From what I’ve read Medicare doesn’t cover much especially the drugs that have just been approved. I know this is a long post but I’m very new at this and appreciate any information. Thank you

      • #29741
        Christine McCann
        Participant

        There are programs to help pay, talk to your pulmonologist.

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