December 16, 2020 at 10:46 am #26534Steve williamsParticipant
Hi all, I’m struggling with the nausea & severe fatigue after a few months on esbriet (I’m down to maybe four useful hours each evening); & am thinking if stopping for two weeks over Christmas to get something like a normal life fir a week or so. Next appt scheduled 23nd January What do you guys think?
December 16, 2020 at 4:23 pm #26537Michael PanagiotopoulosParticipant
Instead of stopping altogether for a while, try trimming down the full dosage. Like taking two 800gr pills daily instead of three. That’s what I’ve been doing for the past year due to the headaches I get every day. It kinda helps. But do consult with your doctor first.
December 17, 2020 at 2:12 pm #26552Pete BesioParticipant
I hear you on the fatigue and nausea. Have you tried Ondansetron (Zofran) for the nausea? It has helped me. And there are ginger candies from “The Ginger People” that are pretty tasty and seem to help a bit. I fight the fatigue factor too, but have learned to embrace the afternoon nap.
I agree with Michael about checking with you doc. When I started esbriet, I had to “titrate up” to the 801mg dosage, I wonder if you would have to do that again if you stop for two weeks?
Good luck with whatever you choose.
December 17, 2020 at 2:55 pm #26553John PennParticipant
I would also agree with trying the reduced dosage to see if that helps before just stopping. I am so fortunate that after 3 years on Esbriet I have had no real side effects. Yes I get fatigue but other than that all is good…,best of luck..
December 18, 2020 at 6:54 am #26567christeenParticipant
I am thankful to God that so far I have not had any trouble since I started taking it except dry skin during summer and occasional rash when some medication don’t agree with it. Dry skin is the only bad reaction to it so far. christeen
December 24, 2020 at 5:02 am #26614Paul CadenParticipant
I am very thankful to nature and evolution as my side effects resemble yours but to a much lesser extent. I always take a meal or a big snack beforehand and lots of water during the day but not at night as I would be waking up making two many trips to the washroom. Have you contacted the company nurses who do follow up I find they are very helpful and respond quickly good luck my friend
December 24, 2020 at 6:50 am #26619christeenParticipant
Thank you Paul. Christeen
December 24, 2020 at 1:56 pm #26625David SwainParticipant
Burning Skin sensation
I started on Esbriet recently and just finished titration up to the full dose. Fortunately, with non of the usual side effects. However, I’ve also recently started feeling a burning/hot skin sensation in my feet and owner legs, also on my upper body to a lesser extent. I wondered if this is a side effect of the Esbriet. My nurse told me she’d not heard of it, but suggested I reduced the Esbriet to one small tablet 3 times a day to see what happens. ie 1/3 of full dose. It may be due to another drug or something else completely. I’m wondering if anyone has else experienced similar feelings?
- This reply was modified 4 months, 1 week ago by David Swain.
December 24, 2020 at 3:41 pm #26632john sliwinskiParticipant
Steve listen to everyone and do consult your pulmonologist prior to stopping your medication. Playing doctor on your own is not the answer. Don’t do more harm than good.
I have been on Esbriet for almost 4 years and luckily for me did not have any side effects. I am stable so far and hope to remain that way.
Keep us posted.
December 24, 2020 at 6:45 pm #26637JerryParticipant
I was on Esbriet, 4 pills a day = 4 headaches a day. I finally said no more. I am on Ofev now, two pills a day and milder side effects. If you are like me you understand that you’re not going to get any better over time. So enjoy the time you have left.
December 24, 2020 at 9:02 pm #26638Regina BolyardParticipant
While on Esbriet I experienced tingling and throbbing in my fingers and toes and to a lesser extent, my feet. I’ve been on a temporary break from Esbriet (doctor’s decision) for about a week while we figure out what medication is causing other issues. Since about 48 hours off Esbriet the sensations I described stopped. They were never uncomfortable enough for me to want to stop treatment, but it does concern me that this is an undocumented side effect.
December 26, 2020 at 6:22 am #26643David SwainParticipant
Thanks Regina. It’s interesting to hear you had those side effects, even though they’re not the same as mine. I think I’ll try stopping for a couple of days, as the nurse said that would be only way to tell. In any case, I think I’ll put up with the burning in order to stay on ESBRIET. Happy new year to you and all who read this.
December 26, 2020 at 10:14 am #26647Carlo De PellegrinParticipant
I have been of Esbriet for three months now and still suffer nausea and fatigue. Esbriet nurse suggest taking the three tablets beginning, mid and end of meal. Slight improvement in nausea, none in fatigue after three days
April 13, 2021 at 4:23 pm #28049Judith ButlerParticipant
I have been taking Esbriet for almost 2 years. I quickly discovered that I could not handle 9 pills a day. I did okay with the first 2 doses but the last 3 pills caused vomiting. So I have taken the reduced dose all this time. Right now I am out of the medication and waiting for insurance to okay the new prior authorization. I don’t know if it has helped or not. I cough quite a bit and become very short of breath with exertion.i also have asthma so I am not sure which one is acting up sometimes.
April 13, 2021 at 5:02 pm #28053Charlene MarshallKeymaster
Thank you so much for sharing your thoughts on this, and I’m glad you’re able to tolerate the 2 doses of Esbriet. I know the 9 pills per day can be tough to deal with in terms of side effects! I hope the insurance approves more medications for you soon. Thanks again for sharing and continue to be well.
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