• Charlene Marshall

    Member
    December 15, 2019 at 9:58 pm

    Completely agree with you Stu & Paul! We’re trying to figure out how to set this up in the back end (ie. admin) end of WordPress so that the changes will show up for you on the front end (ie. user). Here’s hoping we can figure it out – it would be a lot easier, I agree.
    Cheers,
    Charlene.

  • rene-hakkenberg

    Member
    December 17, 2019 at 2:59 pm

    Hi Charlene, hoping that this may help my fellow IPF patients, here is my Ofev and Esbriet story;

    I  was diagnosed with IPF after a lung biopsy in December 2017, although there was CT scan undiagnosed evidence that I had it around 2014. I was put on 2×150 mg Ofev after the biopsy in 2017. This resulted in lack of appetite, diarrhea, weight loss, fatigue, nausea and occasional vomiting. Upon doctors orders I halted the Ofev several times, taking a one month rest, to simply restart at low dosage and slowly build up again to 2×150 mg. In August 2019 I definitely stopped Ofev because of the negative side effects and decided to try Esbriet. I started with 3 times a day with two 276 mg pills but after 5 days at this dosage I started to feel poorly and had some vomiting. I went back to the low dosage of 3 times a day one 267 mg pill and built up the dosage very very slowly, making sure that I ONLY took pills with meals. Advise: keep you pill box at your dinner table so you don’t forget to take your pills during the meal. I am now, 4 months after starting Esbriet, at the final dosage of 3 times a day 3 pills with no, or very minor, side effects, although appetite still not great. I am now hoping that my being shortness of breath will improve or at least remain unchanged.

  • Charlene Marshall

    Member
    December 17, 2019 at 8:14 pm

    Hi Rene,

    So nice to hear from you and thank you so much for writing about your experience with the two anti-fibrotic medications. I know a lot of people really struggle with trying to make both drugs work for them, lots of unpleasant GI side effects as you mention. This will be particularly helpful for a member of ours who is struggling with Esbriet. @lauree-kelly, might Rene’s experience and working up to the top dose of Esbriet slowly be something helpful for you to try?

    Thanks for taking the time to share this Rene, it will without a doubt help others!

    Warm regards,
    Charlene.

  • rthorntonbresnan-net

    Member
    December 15, 2020 at 5:03 pm

    Good afternoon Charlene and all the others giving us good info. I don’t have much to say today accept for my thoughts on  Orev and Esbriet. As most of you know, I was diagnoised this spring with IPF. Complete shocker to me. After some exploring in my chest by a surgeon, was told I was missing a lung and the other is getting messed up. Since, I have been off and on of about 22 pills and inhaler daily. One of them is prednisone. My lung doc has been hinting on me using one of the other 2 but I keep telling him no. I have read to much about the side effect from the people in this forum and by studies on the drugs themselves. The prednisone seems to be helping with the caughing and that’s an accomplishment. I had taken the lung test this summer and didn’t do very good. Only got a score of 37, he was hoping for at least 50 so I could get into a drug test. There are quick a few around now and some have some good signs. All I can say is, here’s to us and a bright future.

  • Charlene Marshall

    Member
    December 16, 2020 at 9:31 am

    Hi Randy,

    Thanks so much for writing and providing us with your thoughts/reflections on both Ofev and Esbriet, along with Prednisone. I am glad the latter is helping with the cough, that is great to hear. Each person’s experience with the anti-fibrotics is different, I agree: some bad and some good. For me, once my body got used to it, I’ve managed very well on Ofev.

    I can say with confidence that there are some amazing teams working in our corner to expedite therapies and treatments for this disease. Here’s to us and a bright future for sure. Happy Holidays!
    Char.

  • paul-caden

    Member
    December 24, 2020 at 5:20 am

    Have been taking Esbriet now for one year. Briefly, you must always take it with a meal or a big snack or the nausea headaches tiredness Etc increase. Luckily evolution permits me to have a 90% normal lifestyle so far. Just went cross-country skiing today for the first time this year and noticed I had to stop more frequently to catch my breath but at least I can still have fun. I have about 80% lung capacity which is moderate deterioration. Now at an ipf Clinic in Montreal and may start some drug experiment programs in the next few years. Charlene does a fantastic job here and thanks. Try to get your tech team to put latest posts at the start and not at the end it would really be beneficial to all

  • Charlene Marshall

    Member
    December 24, 2020 at 2:25 pm

    Hi Paul,

    Thanks so much for sharing your experience with Esbriet with us, I’m glad you’re managing on the medication and able to do fun things like cross-country skiing. Kudos to you! I visited Montreal early last summer, and loved it, beautiful part of our country. 🙂

    Thanks also for the kind words about moderating the forum, I’m very happy to do it and I completely agree with your suggestion about newest posts at the beginning of a thread. I believe the team is actually working on that and/or a new platform that might be easier for us to use. I’m excited to hear about that in 2021 when they’re ready to share. Happy holidays!
    Charlene.

  • debbie-holman

    Member
    January 31, 2021 at 5:03 am

    Did anyone start Esbriet and have more crackles. Have been on one month and feel sound worse. Not even at full dose.

  • Charlene Marshall

    Member
    January 31, 2021 at 8:46 pm

    Hi Debbie

    @holmand

    I’m so sorry to hear of your struggles with Esbriet! These two FDA-approved drugs are really difficult to tolerate. Would you say you’re feeling worse from a pulmonary perspective, or because of the side effects from Esbriet? I know a lot of people have a tough time tolerating it, along with Ofev. However, if it’s your lungs feeling worse it might be best to speak with your physician or the Esbriet nurse as soon as you can. It may not be the medication for you, and they will maybe encourage you to try Ofev or perhaps its not soon enough to assess that. I’ve never taken Esbriet so I’m so sorry I can’t provide any personal experience here.

    Charlene.

  • obleek

    Member
    August 16, 2021 at 9:06 am

    I’ve been taking Esbriet for 3 years. About a year after being diagnosed with IPF. My pulmonologist started early because I had other immediate family members with IPF. Some early stomach issues and sun rashes that have subsided and still seem to have trouble sleeping. Little drop in lung function?.

    I was recently changed to generic Esbriet(Sandoz). Has that happened to others and do you notice any difference?

    STAY WELL

  • jofac-ohandlin

    Member
    September 28, 2021 at 7:16 am

    Hello Girls & Boys,

    I had a call this morning from one of the IPF nursing team to check my level of suffering on OFEV, …. loss of weight, feeling off, and loose stools. I try to get an evening walk around our village taking about 3/4 hour. Frequently it is a struggle to get back, straight into the toilet. Try to control it with Loeramide capsules.

    After 6 years on OFEV my weight has declined from a lean 162 lbs to an almost anorexic 140 lbs but presently stable.

    The enquiry lead up to the suggestion of a change from OFEV to Esbriet (Perfedinone). Having read some of this rather aging thread, it would appear that it may be a jump ‘from the frying pan into the fire’. Has anone experience of this?

    Can anyone give me suggestions, or is it an individual case. …. We all react a bit differntly?

    The group thoughts would be appreciated.

    Thanks, Joe

  • rune-harboe

    Member
    September 28, 2021 at 3:24 pm

    Was diagnosed with IPF in June of 2026. My doctor suggested a biopsy which I did to verify I had IPF. The doctor then prescribed Esbriet. If I was going to do this again I would not go through with a biopsy, and instead ask the doctor if his treatment would be different if IPF was not verified. I may still ask him that question when I see him in December.

    Started taking Esbriet about a couple of months after diagnosed. I am now 79 years old.

    Dr did not say if I had a mild, moderate or severe case of the desease.

    Was not informed as to why the dr prescribed Espriet. I had no knowledge of the desease at that time nor medications used.

    Side effect – heartburn. Taking 40 MG of Pantoprazole in the morning – takes care of my heartburn.

    No suspected reason for the disease. Thinking back, I believe my mother had PF/IPF since she could only walk a few steps before she go out of breath. She passed at 87 years, and probably got the disease in her late 70’s

    I am still doing well even though my lung function is getting a little worse, but no complaints and consider myself lucky as compared to others with this awful disease.

    Best to you all – Rune

  • jim-fletcher

    Member
    May 22, 2022 at 6:58 am

    Hello
    I am a healthy 65 year old male having been just diagnosed with IPF in February of 2022. Just had second visit with pulmonologist and he wants to begin the drug Esbriet. After reading about the side effects of this drug, I am concerned how my quality of life will change and if it is worth it. From what I read there are only 48000 people using this drug world wide. Has anyone else felt this way about starting this drug and is it normal or am I over reacting? I don’t want to be sicker than I already am trying to slow down the progression. If it was a cure I would not hesitate. Feed back welcome

  • jofac-ohandlin

    Member
    May 22, 2022 at 11:49 am

    Hi Jim,

    You ask most pertinent questions. It is accepted that there no cure for our complaint, and the extension to our life by taking either of the two treatments against the side effects is questionable.

    I started a thread asking for experience of the transfer from OFEV (nintedanib) to Esbriet (Pirfenidone). I received many replies indicating that for some the side effects of Esbriet were small, brain fog, nausea, and sun sensitivity.  I was concerned by the prospects of all three.

    I am under the NHS  system in Britain, so do not have the insurance worries experienced by North Americans, but the NHS prescibes!.? I ‘was’ a long term patient, 5 years +, on OFEV at 100 mg x 2 per day, which I survived on. I had for the first 3 months been on the 2 x 150 mg dose but tummy troubles, and was dropped to the lower dose. On the 100’s I had the usual bowel problems at a lesser level, and slight nausea…… but OK!

    The alleged reason for the proposed transfer was due to a loss of weight (nominally I’m 6 foot, 11 stone drop to under 10 stone) this over 6 months. However, I had over 2 months or so with dietary advice (chocolates and sweet puddings)  started to correct this and when the intervention came had regained some 6 lbs. I was content to stay with OFEV! But they insisted!? I am suspicious of their motivations. So! At the end of January, first week of February I started the 3 week ‘titration process’ of building up to the full 3 x 3 x 267 mg Esbriet tablets  daily.

    Sorry to take so long setting the scene.

    But tben, having received a 84 day supply, and having worked up to full dose, all seemed OK. I continued for about 60 days, and contacted the IPF nurses to report all satisfactory and to put in place a repeat prescription.

    Can you imagine my dismay, over the weekend following, my exposed skin (ears, neck, backs of hands)  became hypersensitive to light. This was always a concern as I am fair skinned, typically Irish / Scottish Celtic gene pool, with a hint of red in my hair. I had long ago learned not to sun bath, and to cover up. I were wide brimmed hats, even if they do not suit me!

    Two things happened, the redness of sun damage which did not fade away. The itchyness which was disturbing over night, and a third item little lumps under the skin around the neck and side of face. I descibed it as Braille, rather like the impressions on our medication boxes.

    The advice was to stop for 2 weeks, and was monitored to check my recovery. It was agreed that I could start the titration process again. On day one, after just 3 tablets, I was immediately aware that my skin was reacting. I was keen to continue (what can you do?) and covering up, much as the women in Afghanistan are now required to do, or factor 50 sun screen indoors. Towards the end of the week my local pulmonary nurse checked with me and agreed to continue into a second week rising to the 2 x 3 tablets per day. However, that did not happen, as over the weekend the prescibing IPF nurse called and INSTRUCTED me to discontinue! Bear in mind I now have a further 90 days of Esbriet in hand! Note: monthly liver function tests were normal.

    At present I am not taking any medication. I await a further lung function test, in 2 weeks time. I anticpate that my FVC will have dropped and that they will have a reason too discontinue treatment …. but that is me being pessimistic!

    As a bye the way, i am suspicious of the reason for the change in meds.

    The Esbriet was delivered with an invoice indicating the cost to the NHS, which seems to be something near £ 2,500 per 12 weeks, i.e. about £ 11,000 per year.

    The last indication for the costof OFEV to the NHS was about £ 72 per day, i.e. about £ 26,300 per year.

    So, Esbriet seems a significant saving!

    I have indicated a preference to return to OFEV.

    I will say that I am on tne cusp of going onto regular oxygen. I have noted a significant decline in my physical ability over this year, and have doubts about reaching my 81st next year. Cannot complain ….. still vertical!

    Sorry about the length of this.

    Best wishes and regards to you you all.

    Joe

    • jim-fletcher

      Member
      May 22, 2022 at 3:03 pm

      Thank you for your feedback. I hope the best for you. Still will be doing more research to the side effects and decide if they out weigh the benefit.

  • obleek

    Member
    May 22, 2022 at 12:06 pm

    Hi Jim

    IPF sucks. I was diagnosed 5 years ago(at 55) and have been on Esbriet for 4 years.  Very little lung decline????.  Initially had some stomach upset and sun sensitivity lasted a bit longer but now manageable with sunscreen(mostly on hands) and a big hat when I golf.  No idea if Esbriet  has helped but will definitely will continue taking it. You might want to try Serrapeptase as well.
    Stay safe.
    Rob

    • steve-dragoo

      Member
      May 22, 2022 at 7:54 pm

      To all – regards serrapeptase – you need a higher dose than you might think because of how it is measured )SU’s). I worked up to and maintain 720,000 SU’s nightly.

      Part 2 and very important. If you are taking real serrapeptase never take it anywhere close to other pills – NEVER. Pretty much the same for food. Serrapeptase dissolves dead protein and that’s how it sees pills and food.

      Stay well,
      Steve

  • jim-fletcher

    Member
    May 22, 2022 at 2:51 pm

    Thanks for your feedback. I have a few weeks to decide whether to take the drug. I will be looking for to more feedback from more Esbriet users.

  • cecil-zlotnick

    Member
    December 21, 2022 at 6:06 am

    Hi all on this forum.

    I am 74 years old and am from Johannesburg, South Africa.  I was diagnosed with an interstitial lung disease in November last year after a CT scan following a bout of pneumonia, which affected my breathing.  My pulmonologist told me that my lungs had 65% capacity owing to the scarring or fibrosis.  At the time, I was not on oxygen and was active, running my engineering company which employs 50 people.  I was also walking about 3km a day for exercise.

    In February, I was put onto Esbriet and was told to ramp up to 3 X 267mg capsules a day, over 3 weeks.  I managed 2 X 3 times a day but could not tolerate 3, 3 times a day.  My pulmonologist told me that 2 X 3 times a day would be good enough.  I went for 3 monthly check-ups with my pulmonologist.

    I was fine until August when I had an exacerbation when my oxygen saturation dropped to 70% and I struggled to breathe.  Blood tests were done as well as lung function tests and I was admitted to hospital.  The tests showed that I had contracted a virus.  I was put on oxygen, Prednisone and an antibiotic.  Within 6 days, I was a lot better and released from hospital.  I was told to use oxygen at night only (about one l/min). Meanwhile, my blood sugar went up from the Prednisone, so I have to inject insulin twice a day.  I’ve weaned of the Prednisone, waiting for my sugar to return to normal

    At the beginning of this month, I started having breathing problems and walking a slight distance dropped my oxygen to 70%.  I then had to be on oxygen full time.  I had a CT scan which showed a sudden drop in my lung capacity from 65% down to 40% in only 3 months.  This was a big shock to my pulmonologist and me.  I’ve increased my Esbriet now to a full dosage of 3 X 3 capsules a day and hope this will stop the fast progression of the fibrosis.  I’m on oxygen full time (2l/min and can’t exercise at all without my oxygen stats dropping into the seventies.

    I’m terrified that the progression will continue at the pace it was from August to December, as if it does, I haven’t got long to live.  Has anyone experience with lower and higher dosages of Esbriet?  A suggestion has been to take Esbriet and Ofev at the same time.  Has anyone experience with that?

    Any help or advice would be welcome.

    Regards,

     

    Cecil

     

  • daisyd

    Member
    December 29, 2022 at 6:54 pm

    Just started Esbriet on my second week. I was diagnosed 5 years ago my First Pulmonary Dr. never discussed medicine with me. This year I finally decided after being really sick I had to find a. Ew Pulmonary Dr. I had my CT and to my surprise there had been a change with my lungs. I for the first time was scared.
    My new Dr. didn’t waste any time getting me on meds and doing testing, autoimmune testing. I also, just started Pulmonary Rehab today. I had a fall over the weekend so could only do upper body.

  • cecil-zlotnick

    Member
    January 6, 2023 at 2:50 am

    Hi Donna,

    I was diagnosed with an Interstitial lung disease in November 2021.

    In February this year I started Esbriet but because I couldn’t tolerate the full dosage of 801mg, 3 times per day, I settled on 2/3 of the dosage, which is what my pulmonologist said was good enough.

    Unfortunately, last month I experienced a major deterioration of my lungs whereby my lung capacity changed from 65% to 40% over a period of 3 months.

    I am now on the full dosage and had I known, I would never have settled on the 2/3 dosage.

    I’m not sure whether the full dosage would have prevented the deterioration, but based on my experience, I would recommend persevering with the full dosage of 801mg, 3 times a day,               i.e.  2403 mg per day.

  • daisyd

    Member
    January 12, 2023 at 3:08 pm

    I was on the phone with my prescription insurance for 3 hours yesterday. They want to charge me my next fill for Pirfenidone $900 when I could get it with the TX Drig Discount Card at the local Phsrmacy for $284. They could and would special order it. My insurance said it is not one of their approved Pharmacies and they would not reimburse me. I even spoke to the Appeals and Reimbursements Dept. How Rigid! I would be saving them mostly me alot of money of course I have not met my deductible and if I did the lower $$ it would not go to my deductible. So ridiculous what we have to go through with our insurance these days as if we don’t have enough to deal with our health issues to fight with them. A 3 hour call and to be on hold most of it and the rest people who just don’t know anything.

    • christie

      Moderator
      January 14, 2023 at 4:34 am

      So sorry you had to deal with that Donna. Our system is so broken, it makes being chronically ill a full-time job. I wish I had some advice, but alas… just sending hugs. I hope you can get it sorted out.

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