- This topic has 22 replies, 12 voices, and was last updated 1 month, 1 week ago by Anonymous.
June 10, 2021 at 9:57 am #28816
Greetings to all.
I have been taking Esbriet since the beginning of February this year.
Towards the end of the month I was taking the strong doses of 801 mg 3 times a day.
Because I often felt sick after intake, so I could stop the midday doses. I eat very little for Lunch.
Since that I took 2 times 1 Tab. 801 mg.
Now over a week ago I started with diarrhoea and sickness.
My Doctor said to stop for a few days and then start with doses of 267 mg twice daily 2 tabs.
Does anyone else have tese symptoms and.. how many of you have been taking the 802 mg doses?
I wish all the very best and greet you from Switzerland
June 10, 2021 at 2:26 pm #28819George BeckParticipant
I have been lucky so far. I worked my way up to nine 267 mg pills per day at meals with no side effects except for itchy skin (!). I have been on the high dose for three weeks.
June 10, 2021 at 2:51 pm #28820Bob HodgesParticipant
Have been on Esbirit for a year and a half and only side affect is a lack of energy possible from it. My FVC have been remaining fairly stable with just a slight decrease in volume. Diagnosed 3 yrs ago. Took OFEV for a year and couldn’t handle all the side affects.
June 10, 2021 at 5:50 pm #28823Doug JonesParticipant
The two most common side effects of Esbriet are 1) increased photosensitivity, i.e. more likely to sunburn and 2) gastrointestinal issues including nausea and diarrhea. Most GI symptoms go away within the the first 3 months as your body adjusts to taking the medicine. During that time (and afterwards) it is suggested that you take the Esbriet with food which usually reduces symptoms. Also, your doctor may temporarily reduce the dosage which may help during the introduction phase. I also try to space out my doses taking them as close to 8 hours apart as possible. For more information from the manufacturer see https://www.esbriet.com/taking-esbriet/managing-certain-side-effects.html?c=esb-163fb797758&gclid=Cj0KCQjw8IaGBhCHARIsAGIRRYrv9msK4kvrtMjoFP2Jm2vPwXdao1vJ0sKE-5y2BX8nqGC8osZV8icaAisFEALw_wcB&gclsrc=aw.ds
I have been taking Esbriet (pirfenidone) for over 6 years, since it was first approved by the US Food and Drug Administration. I have been taking the full, normal dose of 801 mg three times per day. I live in Tucson Arizona where the potential for sunburn is high so I found a hand/face lotion with SPF 15 that I apply daily to my face and arms. I wear a hat and–if I am going to be out in the sun a long time–a long-sleeved shirt. I also have long-sleeved beach wear made of comfortable sun-protective cloth that I wear if I go swimming or to the beach. My fibrosis has continued but at a lower pace and I have been essentially stable for the past 2-3 years.
The alternative medication to Esbriet is OFEV which apparently has similar therapeutic results although it works differently. There is a a much greater percentage of patients taking OFEV who have GI issues, however.
June 12, 2021 at 3:59 pm #28846
@ George Beck, Bob Hodges, Doug Jones
Thank you very much for your replies.
It helps me to realise that there are others who take Esbriet for quite a while without too great side effects.
Let’s see how I get on with the Treatment and what the lungs look like in a few months/years
Take care all of you
August 2, 2021 at 3:25 pm #29388
I am surprised that taking D-3 supplements is not part of the regime as lack of sun on the skin depletes ones body and causes other health problems. I have also found taking magnesium is necessary and Omega 3 along with vit E is very helpful and B12 liquid held under the tongue for people over50 as you have lost the enzyme that digest it after 50 yrs old. All of those things help alleviate the side effects and made me feel a lot healthier.
August 2, 2021 at 9:34 pm #29392ChristieParticipant
@mahzie Christine, it surprises me too! It is required (from my mom’s team at UCSF anyway) for post-transplant patients. Vitamin D helps with the uptake of calcium so it’s super important to help keep bones strong when taking medications like prednisone that can reduce bone density. I am not sure if OFEV/esbriet has that effect also, but I am of the opinion that everyone should take d3. I moved from Washington state (9 months of cloudy weather, so I began taking it there) to Hawaii and I still take it!
- This reply was modified 1 month, 2 weeks ago by Christie.
June 16, 2021 at 6:33 am #28885Malcolm MannParticipant
Hi I’ve been on Esbriet (801 x3) for just over a year, my IPF has remained stable :-), no GI issues other than an and aversion to some foods I once loved, and an overall reduced appetite and consequent weight loss. Sun sensitivity hasn’t been an issue. I’m still coughing and suffering fatigue and beer tastes awful.
Other than that everything in the garden is rosy.
June 16, 2021 at 7:08 am #28886
Oh Malcome Mann.. tears are running down my cheek *lol* Beer tastes awful.
No joking aside. My cough has stopped after about 5 months of taking Esbriet 3 times 801.
But I have had problem with weight loss and being sick. So I have been allowed to reduce the doses to 3 times 267 mg.
I do well now and the coughing stayed away.
I wonder if there is an issue about the weight of a person and the medication. If a man of a weight say about 90 kg needs the same amount as a person of say 60 kg??
I wish you all the best and that your cough leaves you soon.
June 17, 2021 at 7:55 am #28899AnonymousInactive
I asked my father’s pulmonologist about lower doses and whether they were effective and she confirmed that it can be and she specifically mentioned a persons size as a factor, so a smaller person might benefit from a smaller doses. It sounded very logical to me and it seems to be the case from their experience too
June 18, 2021 at 4:16 am #28929
Thank you so much for asking your Father about the doses of medication, especially for Esbriet as well as Ofev.
I am now happy with a smaller dose of Esbriet (so far)
Let’s hope it stays like that and one can get on with life and not always think about ones health.
All the very best to you Lnour
and again a big thank you to your Father.
August 2, 2021 at 3:28 pm #29389
Wine doesn’t taste very good to me anymore either, I still drink it once in a while but not much.
June 16, 2021 at 9:48 am #28889Karen MartinParticipant
Hi, Yoli. Love the shortened version of your name. I have been on Esbriet now for nearly two years. I also had diarrhea for a time at first as well as upset stomach. What I was told by the company was this: Eat a small amount and take one pill. Do this again and again for the second and third pills. But what they really stressed was the need to have protein as part of that food. Because Esbriet is an extremely fast-acting medication, you have to buffer it this way. When I started doing that, the problems seriously decreased. I wish you all the best.
June 30, 2021 at 5:30 am #29062AnonymousInactive
Hi Karen great to hear you are managing the side effects well! Just wondering what foods containing protein have you found most effective in dealing with Esbriet GI side effects?
Best of health to you!
June 16, 2021 at 11:56 am #28891
Thank you about your kind remark about my shortened name.
You are so right about taking protein with the Esbriet. I have tried even to take the last one just before I go to sleep. What happened? I woke a few minutes later and had to vomit.
I was really suffering for over a week.
Vomiting and diarrhoea…
I have now started again with a weaker medication. So far I feel fine and hope it stays that way.
Take carte and all the best wishes for you too
June 17, 2021 at 3:38 pm #28909Paul PolidanoParticipant
Having been diagnosed with IPF early last year I was put on OFEV initially but due to bad nausea and diarrhea, my Dr put me on Esbriet while being warned of possible skin irritation. After about 3 months I developed an itching problem, over many parts of my body as well as a horrible scaly skin condition on the back of my hands -almost resembling the look of snakeskin. With my itching becoming intolerable I asked to go back to OFEV thinking that nausea and diarrhea were preferable (which I could manage anyway) than the unbearable skin irritation. Within 2 weeks of stopping Esbriet, my itch and skin condition disappeared completely and I returned to normal.
Having been on OFEV now for almost 12 months -albeit at a lower (200mg dose) per day for the last 6 months, my life with IPF has become more tolerable as both my nausea and diarrhea have subsided somewhat. Also what’s more pleasing, is that my IPF Dr last week advised me (after having undergone my regular breathing test etc.,) that my breathing and liver function haven’t deteriorated since my last visit which was almost 6 months prior.
Hope you overcome your problem also using Esbriet.
PaulP- Downunder in Oz
June 18, 2021 at 4:10 am #28928
Hi Paul from downunder
You really had a bad time above all with your skin. I understand that the sub is stronger and you have more sunny days in Australia than we have for instance here in Switzerland.
It shows again that a smaller dose works as well. Now that I take 2 x 2 Esbriet of the 267 mg I feel myself better.
I seldom go into the sun and then a put on a skin protector factor 50.
How good to read that your breathing and liver function have not deteriorated in the last 6 months.
I wish you all the very best
August 2, 2021 at 3:36 pm #29390
I was given a choice of meds, I didn’t choose OfEV because of the heart side affects, heart disease runs in my family so I thought sensitivity to the sun was a better option, however I am a sun worshiper having grown up living at the beach so, it is a little difficult. I over exposed once and broke out in a rash and had to stop the Esbriet until it cleared up. Not much fun.
June 30, 2021 at 8:53 am #29067Karen MartinParticipant
Lnour/Loai, I have found cottage cheese to be pretty helpful with the GI issues. I also eat chicken and tuna fairly often as my protein. At other times I will drink Boost protein drinks. They come in handy when I don’t want much volume but still need something. I hope these suggestions will help you, too. 🙂
August 5, 2021 at 8:50 am #29425Kate SmithsonParticipant
As I’m not always hungry at the time I’m due to take my ESBRIET tablet, I have found that eating 1/2 a banana or a piece of cheese works. So far no nausea while doing this. I’ve been able to maintain the full dose for two years now and in the 3 years since my diagnosis, my PF test results have remained stable. Best wishes as you continue your medication!
August 7, 2021 at 5:47 am #29450
Yes it is a good Idea to take proteins with the Esbriet. Since I take some spoons of yoghurt with the Medication I have no more stomach problems.
I am only 6 months on Esbriet and have to find my way.
I have contacted Roche here in Switzerland to ask if they have some good ideas as to having no appetite and in my case why the blood pressure sinks after intake of the Esbriet.
They confirmed that one should regard the weight of the person to the doses of the medication.
They are very helpful and it does good to know that not only high gains are important to them but also the humans. All the best ALL OF YOU
August 10, 2021 at 2:11 pm #29461John PennParticipant
I have been on Esbriet for over 3 years. First 2years on the 267 dosage 9 per day. Last year switched to 801 and have not had any issues. Yes, I do need to watch the sun exposure and experience some digestive issues but all are minor. Hope you can get through this.
August 10, 2021 at 5:29 pm #29466AnonymousInactive
Hey John, great to hear that you are getting on well with the medicine. Just wondering, how has your Lung tests or scans been since starting Esbriet?
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