Tagged: chronic illness, disease management, Esbriet, IPF, lung disease, PF, symptoms
- This topic has 27 replies, 17 voices, and was last updated 7 months, 1 week ago by Cecil Zlotnick.
December 11, 2018 at 12:15 pm #15629David CollardParticipant
how long can you continue to take esbriet? Is there a limit to time frame when esbiet no longer slows the scaring of the lungs and you are taken off of esbriet?
December 16, 2018 at 6:01 pm #15677
Thanks for starting this topic thread, it is definitely one I’d be interested in learning more about. Unfortunately though, I don’t know the answer as I am not on Esbriet but Ofev instead. I don’t imagine there is a time limit if it appears to be helping with symptom management and/or disease progression, unless of course secondary symptoms develop like liver issues. I know some patients have experienced elevated liver enzymes after being on Esbriet long-term, or even rashes/hives, etc.
Does anyone know the answer to this question from David?
Thanks again for connecting and curious to hear what physicians say about the length of time you can be on Esbriet, if anyone has asked 🙂
August 1, 2019 at 7:26 am #20578Michael PanagiotopoulosParticipant
I started Esbriet 2 months ago. I asked the pulmonologist who performed BAL bronchoscopy and gave me the official diagnosis for IPF and he responded: until the end or a new therapy comes along.
The point is that even Esbriet effect on IPF (with all its concomitant side effects) is only on a probability percentage basis when contrasted with just a placebo:
To the best of our knowledge, this is the first intention to treat real-life study showing an increased 3 years survival rate in patients treated with Pirfenidone and a survival benefit of 30% compared to patients treated with no antifibrotic agents.” (source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6251092/ )
My point being, is it worth it? Going through all the debilitating side effects (I am being plagued these last 15 days with splitting headaches, dizziness and fatigue, to the point that I need to stay home and inactive most of the day) for a mere 30% chance of life extension, …at this cost?
August 1, 2019 at 7:31 am #20580
Hello Michael, thank you for comment. The question you ask is one that each person will have to answer on their own. I’m sure you will get many different answers and reasons why they have answered a certain way. Thank you for this thought provoking topic. Mark
August 1, 2019 at 8:41 am #20581Robert ObrienParticipant
My pulmonologist and the transplant team go by test results. I have been on Esbriet since January, 2016. Side effects have been appetite loss, weight loss (not the worst thing in the world), occasional mild headaches and fatigue, all pretty manageable. I will stay with it until they say stop and I really don’t expect that to occur until I get a transplant or I cash in my chips. This disease sucks and can really get you down. Bottom line, keep your MD’s informed and heed their advice. Good luck to you David and all my fellow interstitial lung disease travelers!
August 1, 2019 at 10:00 am #20584
Hello Robert, thank you for your input. You offer great advice. Best wishes, Mark.
August 1, 2019 at 12:57 pm #20592Rob TylerParticipant
I never thought there was a time line, or a time where You need to stop taking Esbriet. I have been taking Esbriet for over three years. I had the side effects 6 months after my full daily dose, and battled them for 3 months: (reducing dose, and building back up to max once again, working threw insomnia and mood swings) The drug is working for me. No, I can’t run and jump, and hike the back country. I know Esbriet will not fix the scaring. But I am able to maintain a daily life without 02 at this time. I hope it will continue to do so until the next new drug rolls out with greater projections. I’ll get the blood work done tomorrow, regarding elevated enzymes in my liver. My biggest fear is any type of health set back, where my lungs would need to work harder for daily activities.
Wishing all the best, in their battles with the “unknown”, and keep up the fight!!!!
August 2, 2019 at 9:25 am #20609
Hello Rob, sorry about the delay in replying to your comment. I pray your lab results come back normal today. It seems you are doing pretty good right now. I hope your fibrosis stays put. Keep up the fight and good work. Stay active and keep these bones and muscles moving. Best wishes, Mark
March 3, 2020 at 10:36 pm #23268Jerry GenesioParticipant
Michael – Thank you for the information regarding your experience with Esbriet. I’m sorry you’ve had such debilitating side effects. I was diagnosed with IPF in early January 2020. I’ve had symptoms for several years but they could be attributable to heart disease which I’ve had for many years. I’m very concerned about Esbriet’s side effects, especially because I’m on so many other prescription meds that I’ve been able to tolerate well thus far and I don’t want to add the straw that breaks the proverbial camel’s back. I’m 81 and don’t expect to live forever, and seem do be able to do pretty much what I want right now and am leaning toward leaving well enough alone. I appreciate your very candid post. You’ve certainly given me more grist for the mill.
March 5, 2020 at 9:42 am #23313Connie LumParticipant
I’ve been on Esbriet since October 2018. Initially I had to reduce dose age for Heartburn reflux issues but was able to take the full dose relatively quickly. I have had very few side effects and none that prevents me from my regular activity. Unless I have a increase of liver enzymes or the drug is no longer working (i.e. worsening PFT results or CT scan) I will continue to take it. I am not on oxygen and was diagnosed only because my brother had a double lung transplant at the age of 61. All the siblings were tested and out of 5 , 3 of us have the disease. I am almost 68 and females. They say it happens more in males, my sisters are negative. I would say take it as long as possible, it’s the only choice we have at this time. I am in a clinical trial too. Try to have a positive attitude and keep active. Take care?
March 5, 2020 at 3:17 pm #23326Robert ObrienParticipant
I started Esbriet in January, 2016. I was ordered to stop on February 26, 2020. I am going to be listed next week after a 2 week flush of my system of the Esbriet. They do this because of bleeding concerns. I had minor problems in the beginning and for the most part, I never missed a dose but I would have stayed on it as long as they wanted me too. I think it was important.
March 5, 2020 at 3:19 pm #23327
Thanks for sharing your experience with us about this Connie. Glad to hear you’re relatively side-effect free from Esbriet, that is excellent and I hope it continues for you for a long time to come. Sorry to hear about the genetic/familial link though between your family, that must be so tough. Hope the Esbriet continues to be tolerable for you, and hopefully effective in slowing down the progression of this disease. Hang in there and thanks for participating in the clinical trial to. I admire your positive attitude!
March 5, 2020 at 5:11 pm #23334Jay Turbes-sParticipant
David, ( @dec01 )
All that I’ve read says that you can continue as long as your dr. thinks there’s a benefit. There are recent studies that seem to show that Esbriet combined with Ofev is also more beneficial than Esbriet alone (can’t speak to whether Ofev benefits by adding Esbriet). If your forced vital capacity doesn’t deteriorate too far, Esbriet is probably still a good bet for the duration.
If, however, your doctor(s) decide you’re not benefitting any longer then, like Milady here, they can rationalize your not staying on Esbriet based on their interpretation of the law of diminishing returns. Or they make a sudden reversal of your original diagnosis in favor of ‘discovering’ mitigating circumstances such as suddenly (and contrary to the premier pulmonologists at Nat. Jewish here in CO) finding interstitial-related workings of rheumatoid factor and perhaps (most likely in our case) wishing to avoid the continued high cost of Esbriet to your HMO. Esbriet’s street price is about $USD 140K per year whereas prednisone is about the cost of a bag of M&Ms. If that sounds cynical, you get my drift…
November 1, 2022 at 11:55 pm #33430John PhersonParticipant
Esbriet (pirfenidone) seems to have diminishing therapeutic effect after six months of treatment and possibly no benefit after one year in idiopathic pulmonary fibrosis (IPF) patients with advanced disease, a Greek retrospective study shows.
The study, “<u>Safety and efficacy of pirfenidone in severe Idiopathic Pulmonary Fibrosis: A real-world observational study,</u>” appeared in the journal Pulmonary Pharmacology & Therapeutics.
June 30, 2020 at 9:35 pm #24795
I have been taking Esbriet for +6 mths since Dec 2020. An article in a prestigious French pharma journal influenced me not to try Ofev . I have had mild side effects since the 6 months always taking my full daily dose: insomnia, tummy upset, frequent bathroom visits and mood swings but well worth it perhaps as my HRCT scans, spirology tests, blood all ok with little deterioration in FVC etc The drug is working for me. I can run, cycle, play pickle ball and skate often in winter. I know Esbriet will not fix the scaring but I am able to maintain a healthy daily life and hope Covid research will find us better meds to at least stop the scarring. Rumours say that 2023 could see 1 or 2 breakout meds, got my hopes up!
I honestly believe by pushing our bodies to move esp outdoors, slows this sucker disease down!
July 1, 2020 at 10:06 am #24798
Hello Paul, thank you for sharing. It’s nice to hear the esbriet is working for you and I am happy you remain physically active. I am sure I can speak for pf forum community in saying I hope a cure is on the way. Take care, mark.
July 2, 2020 at 2:05 pm #24809Tom NicholasParticipant
You can stay on Edbriet as long as you have a doctor to prescribe it….. or until your money runs out.
July 7, 2020 at 8:20 am #24868Karen MartinParticipant
I have been taking Esbriet for eight months and dealt with some side effects in the early days. They have dwindled a lot now, other than the loss of appetite, which can be a pain since it is to be taken with food. I was never told there would come a time when I couldn’t take it unless my liver became a problem or I was to be given a transplant, at which time they would take me off of it. I really believe it is individual to each patient, depending on your response to it. (One side note here…I keep seeing people referring to the “scaring” being slowed. As appropriate as the word is, the spelling really should be “scarring.” Just a quirk of mine.) Karen
July 7, 2020 at 3:29 pm #24879
Thanks for sharing Karen – I have a ‘niggly’ about the spelling of scarring as well. It’s funny you mentioned that, as I am guilty of sometimes leaving out that second ‘r’ 🙂 I hope the appetite increases for you, but definitely glad the GI side effects and others have subsided a bit from the Esbriet. Hope it continues to benefit you, take care and thanks for writing.
July 7, 2020 at 3:51 pm #24881Floyd C MontgomeryParticipant
I’ve been on it for 5 months now, and am lucky that i do not suffer any side effects. My first pulmonologist really knew nothing about IPF, and simply would not put me on anything but some inhalers, which did no good. By the time i got to a pulmonologist who specializes in IPF, I am on 10l flow on oxygen to walk, and use oxygen 24/7. The good news is that my use of oxygen has held steady fo the last 4 months. I can’t answer your question, but i intend to keep on it to the end (which may not be too long). I’m 84, and this has definitely made these last few months better.
July 8, 2020 at 9:41 am #24889
Thanks so much for writing and sharing your experience with Esbriet. I’m glad you don’t suffer any of the side effects, that is great to hear. It’s so frustrating when the specialists don’t know about IPF isn’t it, I’m glad the second opinion/doctor that specializes in IPF had some solutions for you that have helped. We appreciate you taking the time to share your experience Floyd, thanks again and be well.
July 9, 2020 at 4:10 pm #24909Janet HaynesParticipant
My husband was diagnosed with IPF in September 2016, was determined by his pulmonologist in November that he was a candidate for Esbriet, and started Esbriet in January 2017. He’s been taking it ever since. He has experienced some (minor) sleep issues and thinks the side effects may be because of medication that he is taking for IPF and heart (had a heart attach in 2012). He does have sleep apnea and this may be a factor. He’s not had any side-effects but did experienced a severe rash from sun exposure 2 years ago which necessitated his stopping Esbriet and restarting from the beginning, which was a real bummer. He sees his pulmonologist quarterly which includes breathing tests, has monthly blood draws specifically to check his kidney functions, and the results from each shows that he is stable. His stamina is beginning to lessen but he is still able to do yard work and many of the things he has done in the past. From his pulmonologist, there is no “end-date” for his being on Esbriet. We’re grateful for the stability of his health.
July 9, 2020 at 4:23 pm #24910
Hello Janet, thank you for sharing. I live to hear stories about persons still remaining stable and active in their pf journey. I hope your husband continues to remain stable and active for many years to come. Take care, Mark.
July 9, 2020 at 4:45 pm #24912Janet HaynesParticipant
Thank you, Mark. We feel very blessed that he is still in relatively good health.
December 24, 2020 at 5:41 am #26616
I am 70, have been on Esbriet since December 2019. Moderate but not overly bothersome side effects as mentioned above. My lung condition has deteriorated 10% in past yr but I still have 80% lung capacity and can still do Sports which I believe are important to help us breathe easier. When on Esbriet the sun is not your friend and doing exercise and forcing your lungs are a necessity. Stay courageous
December 24, 2020 at 5:45 am #26617
I am 70, have been on Esbriet since December 2019. Moderate but not overly bothersome side effects as mentioned above, thanks to evolution. My lung condition has deteriorated 10% in past yr but I still have 80% lung capacity and can still do Sports which I believe are important to help us breathe easier. When on Esbriet the sun is not your friend and doing exercise and forcing your lungs are a necessity. Stay courageous
December 24, 2020 at 3:29 pm #26631John PennParticipant
Been taking Esbriet since November 2017. I struggle with the fatigue and have to take medication for the heart burn that can get severe. I find that very cold air is tough on my breathing so I try to stay in the house when it is below 30. I have no other side effect and will be having my liver panel in February. Due to Covid I have not had a liver panel I over 6 months but they had all been normal up to that point. No indication from doctor to change or stop any medications.
November 1, 2022 at 11:01 am #33428Cecil ZlotnickParticipant
Hi everyone concerned with IPF or ILD.
I am 74 years old and am from Johannesburg South Africa.
My story started when I was diagnosed with an interstitial lung disease in November last year after a bout of pneumonia and a CT scan.
I have 65 -70% available lung capacity with the remainder being scarred or having fibrosis. I do not have any underlying autoimmune disease and the origin of my disease is unknown.
I have been taking Esbriet since February and have settled on 2 X 267 capsules 3 times a day, which is the maximum I could tolerate due to the debilitating side effects. This is 2/3 of the full dosage which is acceptable to my pulmonologist. When I was on the full dosage, dizziness, headaches, nausea and tiredness prevented me from working. I have an engineering business and need to work full time.
Until August this year, I was doing very well and was walking about 3 Km per day. My average oxygen saturation was between 92 and 94% but less during walking.
In August, all of a sudden, I started having shortness of breath and was unable to exercise. My oxygen level dropped to about 77%. I immediately saw my pulmonologist who put me on oxygen and immediately admitted me to hospital, where I was given prednisone (cortisone) and an antibiotic as I was diagnosed with a viral infection with a secondary bacterial infection. In hospital, I was constantly on 2l/min of oxygen which increased my oxygen saturation level to 95%. After 3 days, the external oxygen was reduced to 1l/min and after the 4th day, removed altogether as my oxygen saturation had increased to 93% without any external oxygen. On the 6th day I was released from hospital and went home. I was told to use external oxygen at night for 2 weeks when sleeping, but not during the day.
My pulmonologist gave me a plan for the reduction of the prednisone over 20 days. However, after about 10 days, (prednisone reduced from 30mg/day to 10mg/day), I became short of breath and my oxygen level dropped into the 70’s and I had to be on external oxygen all day and night. Upon consultation with my pulmonologist, it was determined that I must still have an inflammation and would have to be back on the prednisone.
I was on the higher dose for 10 days and 30mg/day, stats back up in the 90’s. I’m slowly reducing the prednisone by 2.5mg/week and am currently on 12.5mg per day. Slowly getting better and trying to exercise. I’m on oxygen only at night when sleeping – now 1.5 l/min. Meanwhile the prednisone has caused me to become diabetic and I have to inject insulin twice a day. Apparently, this is temporary until I’m off the prednisone.
During the whole time I continued to take Esbriet. The good news is that my lungs have not deteriorated in the last year as per the latest CT scan. I’m hoping that it’s a result of the Esbriet and I’m continuing to take it. No liver or kidney problems and only slight nausea or headache after the morning dose.
I’d love to hear of similar experiences and any advice anyone can give from anyone’s own experience and knowledge.
May 4, 2023 at 8:23 am #34980Camila LopezParticipant
Hello there. I started taking Esbriet in August 2022. I couldn’t tolerate the 3 x 3 daily doses but was doing good on 2 x 3. I always felt a bit without energy but other side effects were tolerable. Although my CT scan says I have extreme lung damage, I don’t have symptoms. I’m neither short of breath, nor coughing, and my oxygen level is always 99 or 98. The scarring wasn’t advancing. In February I was ordered to quit Esbriet for one month due to a lack of energy and itching. This April I was started slowly again but I was feeling without energy more and the itching started again immediately. My last IO PFT W/ PLETHYSMOGRAPHY result was a little better. Tomorrow I see the pulmonologist again.
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