March 2, 2021 at 1:07 pm #27534
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 1 year, 2 months ago by Charlene Marshall. Reason: formatting to remove code
March 2, 2021 at 5:08 pm #27541Lou Body IVParticipant
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
March 2, 2021 at 8:40 pm #27551Charlene MarshallKeymaster
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.
March 2, 2021 at 9:18 pm #27552Regina BolyardParticipant
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.
March 3, 2021 at 9:00 am #27558Carol RichardsParticipant
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!
September 26, 2021 at 9:17 am #30044Sue SteeleParticipant
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.
March 5, 2021 at 9:16 am #27585SharonParticipant
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.
June 18, 2021 at 4:59 pm #28938Bill CarnerParticipant
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.
July 7, 2021 at 1:21 am #29121John callaghanParticipant
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.
March 6, 2021 at 9:35 am #27603Charlene MarshallKeymaster
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.
June 9, 2021 at 2:26 pm #28812
Sorry guys, appreciate the feedback but had to change my email sovjust read them all!
August 30, 2021 at 5:38 pm #29742SharonParticipant
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
June 10, 2021 at 10:51 am #28817AnonymousInactive
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
June 10, 2021 at 3:09 pm #28821Jess SchroederParticipant
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.
June 10, 2021 at 4:35 pm #28824Lou Body IVParticipant
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.
June 11, 2021 at 7:17 am #28834Carlo De PellegrinParticipant
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.
June 17, 2021 at 7:29 am #28896AnonymousInactive
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.
August 30, 2021 at 5:26 pm #29740
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.
June 28, 2021 at 9:04 am #29032Yolanda GermannParticipant
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.
July 2, 2021 at 3:56 pm #29094
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!
August 28, 2021 at 5:08 pm #29726Gail EibenParticipant
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
August 30, 2021 at 5:30 pm #29741
There are programs to help pay, talk to your pulmonologist.
February 1, 2022 at 3:07 pm #30926
I have found that taking all three caps with food in my mouth so I swallow all together has kept me from nausea, it doesn’t take much half a banana works well but any food works for me. I had a lot of nausea at first but don’t any more as long as I take the caps as mentioned and make sure I wait long enough in between doses 3 caps 3x day for a total of nine my schedule is 10am 2pm 6 or 7 pm. hope this helps.
February 3, 2022 at 9:58 am #30947Jofac O’HandlinParticipant
Hi to all participants on this thread.
I am in the process of transition from OFEV to Esbriet (when I receive them!). This propossed due to progressive weight loss. A loss that I now have under control, Having re-gained 10 lbs over 2 months!
On another thread, I had asked about side effects of Esbriet and had a lot of positive responses. This thread has got me somewhat concerned. Nausia and tiredness are not desirable, I do not handle them well.
We will see!
Thanks to all, Joe
February 23, 2022 at 1:13 pm #31151Cecil ZlotnickParticipant
Hi All participants on this forum.
I was diagnosed with Interstitial lung disease in November 2021. According to my pulmonologist, it is not IPF but is a fibrotic lung disease which she says is not as serious. I really don’t know the difference and assume this diagnosis came from my CT scan and lung function tests. The scarring on my lungs is at least 18 months old concluded from chest x rays. We’re not sure where the fibrosis came from as I do not have an autoimmune disease. A few years ago , I had a nasty accident at my factory whereby I ingested a lungful of anhydrous ammonia and choked for over a minute. I’m not sure whether this caused burns and scarring of my lungs. Furthermore, since 2018 I have been on a statin for a blockage in my carotid artery. In 2017, an FDA warning was put out about statins causing interstitial lung disease. Upon seeing this I stopped taking statin (Crestor 20mg/day).
In the meantime, I started Esbriet 2 1/2 weeks ago. First week:- 1 X 267g, 3 times a day. Second week:- 2 X 267g, 3 times a day. This week I went onto 3 X 267g, 3 times a day. First 2 weeks, no side effects, except right at the beginning of the first week. The problem is that I can’t tolerate the full dosage of 801g, 3 times a day. I have severe dizziness or light-headedness, nausea and headaches. With the dizziness, I can’t function and this is a problem as I have an engineering business to run.
Does anyone know whether taking a lower dosage is still effective against in stopping progression of the fibrosis? Anyone know of cases where te fibrosis does not progress without anti fibrotic medication?
February 23, 2022 at 7:44 pm #31157Jofac O’HandlinParticipant
Like you I started Esbriet (pirfenidone) 2 weeks ago Monday, so have just had my 3rd day on the full 3 x 3 – 267 mg dose. At present I feel lack lustre but not dizzy or nauseous. GI problems much better, but not quite back to normal.
A quick summary of my position. I am the person transitioning from OFEV to Esbriet due to weight loss. My history is preliminary diagnosis Aug 2013. Confirmed by lung biopsy Dec 2014. Started OFEV May 2015.
In the discussions with the Respiratory Consultant prior to the biopsy it was indicated that there was a ‘family’ of lung problems which wlll show on scans. Some less serious than outright IPF. In my case, the biopsy revealed the worst of the options. I am fortunate that over 9 years on I am still ‘vertical’.
On the forum I found: http://www.atsjournals.org A Novel Antifibrotic Mechanism of Nintedanib and Pirfenidone. Inhibition of Collogen Fibril Assembly.
This is a big read, using a lot of medical language that I, as an electrical engineer, have difficulty with. The main thing is that it indicates the effect of the treatments are dose dependant.
Due to GI troubles I couldn’t take the recommended dose, 1 x 150 mg twice per day of OFFEV (nintedanib). After 1 year I was reduced to the 100 mg capsules. So I’ve had almost 6 years on that treatment at the reduced dose.
The mechanism of PF is highly complex, and variable from person to person. My observation is to keep as active as possible, eat healthily, and keep moving as far as ones declining abilities allow.
My evening walk of 2 miles (+ if poss) is essential, my speed is not what it was, and hills harder, but still making it without O2 …. just about!
I wish you well, and hope that you are able to adjust to the medication.
Best wishes, Joe
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