Taking time off from esbrietPosted by steve-williams on December 16, 2020 at 10:46 am
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?
MemberDecember 16, 2020 at 4:23 pm
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.
MemberDecember 17, 2020 at 2:12 pm
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.
MemberDecember 17, 2020 at 2:55 pm
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..
MemberDecember 18, 2020 at 6:54 am
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
MemberDecember 24, 2020 at 5:02 am
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
MemberDecember 24, 2020 at 6:50 am
Thank you Paul. Christeen
MemberDecember 24, 2020 at 1:56 pm
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?
MemberDecember 24, 2020 at 3:41 pm
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.
MemberDecember 24, 2020 at 6:45 pm
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.
MemberDecember 24, 2020 at 9:02 pm
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.
MemberDecember 26, 2020 at 6:22 am
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.
MemberDecember 26, 2020 at 10:14 am
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
MemberApril 13, 2021 at 4:23 pm
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.
MemberApril 13, 2021 at 5:02 pm
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.
MemberJune 9, 2021 at 2:22 pm
Thanks for all the advice
MemberJune 10, 2021 at 9:15 am
Listen up everyone who is taking Esbriet 9 pills a day.That is the old way. They have Esbriet which is now 801mg and you only take 1 pill 3 times a day rather than the 9 pills. Check with your pulmonologist.
MemberJuly 1, 2021 at 10:21 am
My brother has been on the 1 pill a day for a few months, but he seriously experiencing a really bad case of photosensitivity to the drug. Has anyone experienced terrible skin reaction to the sun on Esbriet? He is spending his time in the basement just to get out of any kind of light. I suggested he ask his pulmonologist to either lower the dose or move to OFEV but he has a heart condition. Which is my other question…does anyone know that people with IPF should totally avoid OFEV if they have a heart condition? Or are the risks the same in both drugs. Thanks.
ModeratorJuly 8, 2021 at 2:18 am
@kimjacomo13gmail-com Kim, I can’t speak to photosensitivity, but I know that many people with PF also develop heart issues. I imagine that doctors know that and are aware of potential risks between the two drugs. My mom was on OFEV with severe A-fib. Many others have pulmonary hypertension, and other cardiac comorbidities, and still take OFEV. Seems like sometimes one is just more tolerable than the other for some people… might be the case with your brother. It’s definitely worth brining up with his doctor and possibly trying OFEV instead. Wishing you both luck with it.
MemberJuly 14, 2021 at 9:24 am
The documentation you get with the Esbreit tells you to stay out of the sun. If you don’t you will break out with a rash. You need to supplement with Vitamin D3, very important.
MemberJuly 14, 2021 at 9:14 am
I had trouble at first until I found that if I would swallow the pills with a bite of food (bananas work well) I didn’t have that problem any more. I also took a pro-biotic (prescribed). I don’t think it is wise to stop and start
Esbriet if you can help it. Ask your pulmonary Dr..
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