• michael-lamkin

    Member
    December 11, 2018 at 4:17 pm

    Hi all!  I’ve been on the Esbriet for about five and a half months. For the first two months the only side effects I noticed were increased shortness of breath, some loss of appetite,  nausea and more weakness than usual. Then the nausea seemed to subside a bit the diarrhea started which continues even now. I also got a nasty rash on my arms and legs which was determined to be caused by exposure to the sun and that was eliminated by taking a medication for a week and covering my arms and legs when I go outside. I guess the people at Esbriet are serious when they say the Esbriet makes your skin sensitive to sunlight, which I ignored for the first couple of months, until I got the rash. Lesson learned! I suppose the diarrhea is probably an allergic reaction but I’ll live with it if the Esbriet is working. I had a CT Scan three weeks ago and my pulmonary doctor said he hought it looked a little better (?) than the one I had eight months ago although the radiologist seemed to feel there was little or no change.
    I have a history of Valley Fever which, after 15 months, had finally gone dormant at the same time I was told I have IPF. A blood test I had a month ago indicated the Valley Fever had returned so I’m now waiting to see how my pumonary doctor wants to proceed. I’ll see him on December 18th. I’m guessing most of you guys aren’t familiar with Valley Fever but if you’re interested please feel free to google it.

    • Charlene Marshall

      Member
      December 16, 2018 at 7:09 pm

      Hi Michael,

      Thanks so much for updating us on how you’re making out with the Esbriet, it’s nice to hear from you! Glad you’re able to manage the side effects of Esbriet thus far, and I hope your pulmonologist is the one that is right about your CT scan – in that, I hope there is some improvement for you. I’ll keep my fingers crossed that the Esbriet continues to be tolerable for you, but so sorry to hear the Valley Fever has returned. Your doctors appointment this week will determine how best to proceed in treating it? Is it common for it to return? I hope your appointment goes well, I’ll be thinking of you!

      Sincerely,
      Charlene.

  • may-mya-win

    Member
    December 14, 2018 at 5:31 am

    Dear Charlene.

    I was diagnosed as having PF for about a year.

    Antifibrotic agents were withheld initially because my doctor suspected autoimmune disease. Other medications were tried first.

    My condition deteriorated – respiratory tract infections contributed to this.

    50%of my lungs were gone from the initial 69%reduction. Antifibrotics were now a must.

    I was given a choice -and I chose Ofev because of the simple dosing. But my liver enzymes went off so badly. This improved on stopping the drug. Half the dose was the same story. It was obvious now that my liver was unable to tolerate it.

    My doctor started me on the only other option – Esbiret, the side effect also included liver toxicity. I was very wary and afraid.

    I have been on it since 5thNov and I am now on the maximum dose of 801mg three times a day. There are no tummy upsets and my liver tests are also normal.

    How come this one is tolerated by my liver? Maybe it is a case of ‘one man’s meat is another man’s poison’.

    The benefits of this are that I cough less, and the mucous is also less. My oxygen saturation has increased from 95percent to 97percent while I rest. I cannot, however, exert too much because if I do too much too fast,  it drops to 88percent and I am breathless. Exercise is with oxygen.

    I hope to improve further as it is early days yet.

    The reason of this disclosure is to encourage my comrades who suffer from severe side effects. Take heart- there is an alternative and it may suit you better.

    When starting these expensive medicines, just buy the minimum at first. It may not suit you, and the pharmacy most likely will not take the remaining pills back.

    Charlene, some of us are so fortunate – the right drug straight away. That is the best but there is an alternative for those who are not as fortunate. I sincerely wish everyone the right choice the first time.

    I have benefitted so much from your forum.

    May

  • Charlene Marshall

    Member
    December 16, 2018 at 7:22 pm

    Hi May,

    Thanks so much for writing, it is nice to hear from you and I appreciate your sharing a bit of your experience with me. Have you had a nice weekend?

    So sorry to hear that the doctors misunderstood your IPF, and instead attributed it to an autoimmune condition, thus withholding the anti-fibrotic medications. Did any of the other medications for the autoimmune disease help you at all? I have heard of them helping a little bit sometimes, things like Cellcept and/or Prednisone. That must have been so frustrating to know your lung function declined, and also that the Ofev caused trouble with your liver. I wonder if this is a common experience? It sounds like it based on what others have shared with the forum so I am going to keep an eye open for it because I am on Ofev too. Glad you’ve switched to Esbriet, and that your liver seems to be tolerating it better. I’ll keep my fingers crossed that it remains this way for you!

    Good advice to other patients who struggle with one drug, to try the other if they can because it may work for them. I really hope it continues to give you goo results. So appreciate your advice, and sharing your experience to go with it and really glad you’re part of our forums. I agree, it is such a wonderful community and filled with lots of knowledge from other patients. Glad you’re benefitting from it as well!

    Happy holidays!
    Charlene.

  • david-collard

    Member
    December 18, 2018 at 1:20 pm

    my question is “ending Esbriet” rather than starting it…. I have been on |Esbriet for several years and it definitely has slowed down the progression of the scaring in my IPF lungs. However the last breathing test identified that esbriet was no longer slowing down the progression and the government medical plan was no longer going to support payment. Has anyone experienced this situation and what happens when you stop taking esbriet?

    • Charlene Marshall

      Member
      December 21, 2018 at 8:54 am

      Hi David,

      Thanks so much for your message, and sorry your inquiry is getting responded to about starting Esbriet vs. ending it. I’m not sure I’ve connected with anyone in the forums (to my recollection, anyways) who has ended Esbriet, without having a reaction / allergy to it as their reason for stopping it. My forum friend Paula said she found it was helpful for her, but then after a few months she developed an allergic reaction to it, and I know this happened to a couple of other folks as well who ended up not being able to tolerate it after a few months, despite it helping them, which is most unfortunate.

      I did get your private message too, which I’ll reply to as well so if you’d rather take this discussion there that is okay with me also, but did OHIP deny covering the cost of this drug for you because your latest scan showed it is no longer slowing the progression? Any chance you could get switched onto OFEV as the other approved anti-fibrotic drug that might help slow the progression, with government coverage? Curious to hear if your doctor mentioned this at all to you. From what I understood, all the forum members who stopped taking Esbriet started to feel better as soon as the drug got out of their system, although I’m not sure what the impact is or has been on their disease progression. Not sure if this is helpful at all? Sorry I don’t have more to share…

      Take care,
      Charlene.

  • raymond-c-king

    Member
    December 18, 2018 at 2:31 pm

    Hi Charlene.

    I have sent you a message by another source on any personal information.

    I think I am comfortable about my not being able to take any Esbriet or OPEV. I’m not sure how much they would have actually increased my lifespan. The side effects I was experiencing were not worth trying it later.

    I have been feeling well since I stopped taking the Esbriet. I will see how good or bad the IPF is progressing when I have my six-month reevaluation in January and will post how the test went later.

    Thanks for your continued interest.

    Take care,

    Ray

    • Charlene Marshall

      Member
      December 21, 2018 at 8:57 am

      Hi Ray,

      Thanks so much for your reply, and letting me know you sent me an email. I just checked and received both messages so I’ll definitely respond as soon as I can. I hope to get all caught up on emails today, so if you don’t hear back from me today, it’ll be this weekend for sure 🙂

      I can certainly see your point about the side effects from the drugs impacting your quality of life, especially when we’re unsure how long we have with IPF anyways. I think Paula feels the same way, based on how terrible the OFEV was making her feel also.

      Really glad you have an upcoming test in January – I do too, on January 17th – and hope yours goes well. It’ll be good to have a new baseline to evaluate the disease progression/stabilization from with having the anti-fibrotics out of your system. Please do let us know how they go when you can, and hope you’re all gearing up for a wonderful Christmas.

      Warm regards,
      Charlene.

  • susan-howitt

    Member
    February 13, 2019 at 11:28 am

    Although I have been offered Esbriet I have decided not to take it for several reasons. 1) I don’t have IPF but CPFE + several other lung diseases. 2) because of having several progressive diseases can’t see it working for all of them and not much point in maybe slowing down one or two and not the others.  3) At the moment I feel fine if breathless and am allergic to a lot.  4) Living abroad and with Brexit looming there is a chance that I will not have health cover and at 2,000€ a month there is no way in this world that I can afford it.

  • Charlene Marshall

    Member
    February 13, 2019 at 7:36 pm

    Hi Susan,

    I applaud and respect your decision not to start Esbriet for the reasons listed. Did your doctor understand, too? Sadly, and far too often, patients are judged when they don’t take the drugs just automatically prescribed. Its tough to be in this position, but sounds like you’ve thought about all your options and I am glad to hear that for the most part you feel okay. I hope that continues for you for a long time.

    Warm regards,
    Charlene.

    • tony-buxton

      Member
      February 17, 2019 at 12:14 am

      Susan
      I buy generic ESBRIET online from India at $0.25 a tablet.

  • marianne

    Member
    June 16, 2019 at 2:28 pm

    Hi all –

    My pulmonary doctor has decided to prescribe pirfenidone instead of OFEV in hopes that the cost will be less expensive through my insurance.  He wrote the prescription for 267 mg – 3 times a day, then 534 mg – 3 times a day, then 801 mg – 3 times a day.  He also told me that he thought in 4-6 months that would be a generic form of pirfenidone available in the US.

     

    I originally asked for OFEV because of the possibility of sun sensitivity with pirfenidone.

    That’s is all I know right now.

    Marianne

    P.S. Has anyone switched from Esbreit to OFEV or from OFEV to Esbreit?  If so, why did you switch – allergic, side effects, etc.

  • justme0956

    Member
    June 16, 2019 at 6:25 pm

    @Marianne, I was switched from Esbriet to OFEV because I developed an allergy to it. I really have not had any issue with the sun while being on either one. I actually think that the Esbriet worked better but I could be wrong.

    My doctor just increased the dosage from 100 twice a day to 150 twice a day as my SOB is getting worse and I am now having episodes where my fingers and toes turn blue.

    As for the cost, Check out. https://www.patientservicesinc.org/     

    They will help with the cost after your insurance company pays what they will pay. Many places that used to provide help for PF meds are no longer doing it.

    As for the projection of when the generic form will be on the market, I have not heard anything but I have been totally wrapped up in the process of trying to get on the lung transplant list at Mass General Hospital. I am at the 3/4 mark of the process.

    Good luck with the meds.

  • roger-mills

    Member
    June 20, 2019 at 12:58 pm

    Hello All,

    I am holding out taking Esbriet because of side effects and the fact that I’m already taking close to 14 medicines/supplements per day. I have been polite and told the three different doctors that have encouraged me to try it. I am 66 years old and having seen my Mom suffer from permanent side effects from cancer treatment I am wary of them. I may not live as long as those who take it, but i hope that my time that i have will be of higher quality with my 16 year old son. I use an oxygen concentrator at night and carry a tank with me to work and anywhere i will be walking any distance over a few steps. I was diagnosed with IPF in April 2016. I wish all of you the best who are taking this medicine……Roger

  • Malcolm Mann

    Member
    September 8, 2019 at 5:18 am

    test

    can’t post again

    Mal

  • Malcolm Mann

    Member
    September 8, 2019 at 5:19 am

    that should be can’t post more than 3 lines

    mal

    • Charlene Marshall

      Member
      September 10, 2019 at 7:51 am

      Hi @mal-com,

      So sorry you’re experiencing this issue with the forum again! I’ll follow up with our tech team and see what is going on, perhaps there is a glitch with your username for an unknown reason. Stay tuned – I’ll follow up!

      Thanks,
      Charlene.

  • justme0956

    Member
    September 8, 2019 at 6:50 am

    @Roger Mills, I had no side affects with Esbriet. Well for the first 4 – 5 months, then I developed an allergy to it. Then they put me on OFEV. Within 3 months I got diarrhea. Bad. They took me off for a few months to give my body a rest. Then started me back. After a few months the diarrhea came back.

    I am now off of OFEV because I made the transplant list and MGH states that the OFEV interferes with the healing process.

    Bottom line, you need to decide what will be best for you. You really can not compare the side affects that your mom had from her cancer treatments with the stuff for the fibrosis. In reality the drugs only help to slow down the process. Good luck in your decision and if your doctors do not like your decision tell them its your body, you understand what your being informed of, but bottom line is your making the best decision for you. If they can not respect that, then you might need to find another doctor.

    • Charlene Marshall

      Member
      September 10, 2019 at 7:55 am

      Hi Paula,

      Thanks for writing! I hope you’re doing as well as possible as you wait on the transplant list, I think of you often and can’t wait to hear when you’ve gotten “the call”! You’re so kind to write and share your experience with others, when I know how difficult it was for you with both anti-fibrotic medications. Thank you for sharing…

      Think of you often,
      Charlene.

      • robert-obrien

        Member
        September 10, 2019 at 8:14 am

        Paula, when did you get on the list?  How long after testing were you notified?  I have been thoroughly tested at MGH (12/17) but I am told I am too stable.  My next meeting with the team (Todd and Mauricio) is in November.  I am getting worse and I have followed Anne Lafleur’s guidelines and am wondering what I may be in for each time I have my follow up meetings.  I think I will probably have to retest but I can handle that.  Astor ordered a stress test in May which went fine.  I am 72 and he said they need to consider health and age in my case.  We’ll see what happens.

      • justme0956

        Member
        September 10, 2019 at 11:51 am

        Robert Obrien ( @bobo )

        I was put on the the list the 20th of Aug. (I had my first appointment in April of this year) I was recently bumped from 3 lpm to 8 and it appears that might be bumped up again.  I would call the person you speak with in the team (my contact person is Jill) about how your getting worse to see if you can bump up your being reevaluated.  Where you are no longer stable one would think that would get you back on the list. As for your age, there was a post transfer guy there slightly older than you and he was doing great.

        Ann is wonderful, but there is only so much she can do. Personally I would also have my pulmonary guy advocate for you with them.

        If you ever want to chat I can give you my email address or phone. Being on the list is wonderful but…… unlike having a time frame, you are constantly waiting for that phone call.

      • justme0956

        Member
        September 10, 2019 at 11:53 am

        Thanks Charlene. I think of you often as well. I know your very busy and I hope all is going well for you. Enjoy your trip. I am so jealous.

      • Charlene Marshall

        Member
        September 11, 2019 at 8:44 am

        ❤️ ❤️

        Thanks Paula! I’ll be thinking of you and sending you all my love and good vibes from Hawaii!
        Charlene.

  • stu

    Member
    September 8, 2019 at 1:07 pm

    I was diagnosed with IPF two months ago. I’m currently taking pirfenidone and reached full dosage level two weeks ago. I have had a few relatively minor side effects and seem to be tolerating it well.

    I’m posting to this forum for the first time because I think the readers who can’t get insurance coverage to pay for Esbriet in the US might be interested in other options.

    I’m a retired US citizen who has lived in Mexico for ten years. In Mexico, pirfenidone is marketed under the brand name KitosCell.  It comes in 600 mg tablets and when you’re at full dosage of 2,400 mg/day you take two tablets two times daily. It is manufactured as a prolonged release tablet which is why you only need to take two doses a day unlike Esbriet   which needs to be taken three times a day. You can buy 90 tablet bottles of KitosCell in Mexico for approximately US$450 (which will vary slightly according to the dollar/peso exchange rate) which will last you 22 days at full dosage of 4 tablets  per day. You don’t  need a doctors prescription to buy KitosCell in Mexico, which is normally ordered by mail and not available in Mexican pharmacies.

    My doctor phased the dosage in gradually over the period of a month. I started with a ½ tablet (300mg) twice a day for the first week then a full tablet (600mg) twice a day for a week then 1½ tablets (900mg) for a week then finally the full dosage of  2 tablets (2400mg) a day. We’ll see how well I do with it after few months.

    I do have private Mexican health insurance that covers most of the cost.

    FYI, I understand that US Esbriet is manufactured in Mexico.

    • mark-koziol

      Member
      September 10, 2019 at 7:59 am

      Hello Stu, thank you for the information on acquiring Esbriet in Mexico. This can potentially offer another avenue of affordability for our members. Take care, Mark.

  • stu

    Member
    September 10, 2019 at 8:23 am

    I would like to make a suggestion to the moderator of this forum and all of the other forums on Pulmonary Fibrosis News. Currently you have to scroll down to the bottom of a very long list of posts to see the latest one. Could you please reverse the order so the latest posts are at the top. This would benefit the members as they would see how the latest treatments were progressing when they first start viewing the forum. Thanks.

    • mark-koziol

      Member
      September 10, 2019 at 2:21 pm

      Hello Stu, we do not have the power to do this but I will pass your suggestion on to the tech department. They are very accommodating with our requests and I think if it is possible it will get done. Thanks, Mark

  • Charlene Marshall

    Member
    September 11, 2019 at 8:40 am

    Hi Stu,

    Thanks for your suggestion, it is a really great idea! I think we’ve explored this before, though there was a barrier to having the forums set up this way for some reason. That being said, I’ll certainly bring this forward to the department, alongside Mark, and see if we can revisit this if it would be beneficial to our members.

    Thanks again,
    Charlene.

  • faye-smithers

    Member
    September 26, 2019 at 7:23 pm

    Hello, my husband is newly diagnosed with IPF and his doctor is recommending he start Esbriet.  This might seem like a unusual question, but can anyone tell me the size of the pill form, the one that’s taken 3 pills, three times a day.  My husband had radiation on his neck years ago and has some restrictions of the size of pills that he can take.  I was told the pills could not be cut in two.  Any feedback would be greatly appreciated.

     

    • mark-koziol

      Member
      September 26, 2019 at 7:58 pm

      Hello Faye, your question is not unusual. We all have our own story and comorbidities. I understand his problem because I have an esophageal motility problem. The manufacturer of this medicine will be able to tell you. Genentech makes Esbriet and if you call their customer service unit who services Esbriet I’m sure they could answer your question. Take care, mark

  • jim-foley

    Member
    October 1, 2019 at 8:24 am

    My IPF diagnosis dates from January 2017. I started Ofev 2 months later but developed intolerable side effects (gastro distress and fatigue) by March 2019. I then switched to Espiret. The side effects are minimal to this point other than considerably  increased photosensitivity.

  • Charlene Marshall

    Member
    October 1, 2019 at 12:15 pm

    Hi Jim,

    Thanks so much for writing and sharing your experience about this topic! The GI side effects for Ofev can be pretty intolerable, so I’m glad the other anti-fibrotic medication is working for you. Hope Esbriet continues to be a better medication for you!
    Sincerely,
    Charlene

  • dave-sabatelli

    Member
    December 5, 2019 at 8:33 am

    Two days after my open lung biopsy May 13 2019 my Dr confirmed I have IPF. He said there were two drugs available to slow down the progression of this disease Esbriet and Ofev. He explained the side effects of both and recommended I take Esbriet. The main reason, I am very active and with Ofev you need to know where the bathrooms are located. It took about three weeks for my first prescription of Esbriet to arrive that was about seven months ago. The side effects of Esbriet I was most concerned about was sun sensitivity and nausea. I am happy to report no sun sensitivity and moderate nausea. I take protein drinks like Boost when I can’t eat a full meal and try to spread out the three doses equally throughout the day. My six month breathing test showed no decrease in lung function and that is good news.

    • Charlene Marshall

      Member
      December 5, 2019 at 9:03 am

      Hi Dave,

      That is indeed good news, I am so glad to hear the side effects weren’t as bad with the Esbriet as one might anticipate! Using Boost protein drinks is a really good idea when you can’t eat a full meal, and I know Mark (my co-columnist) said the trick for him to eat was spreading smaller meals out throughout the day, which sounds like it is working for you as well. That is great! Thanks for sharing your experience with us and I hope you continue to be active and mostly side-effect free from the Esbriet.

      Warm wishes,
      Charlene.

  • sheila-obrien

    Member
    December 5, 2019 at 3:54 pm

    Hi there

    I have been taking Esbriet since 1st January 2019. Diagnosed with IPF in August 2018. I am 74yrs old.

    I had a gallbladder removal in May this year and that cut down the acid reflux  immensely. However I have had acid reflux since early 2000’s.

    No real problems with Esbriet except for a skin outbreak 2 months ago. I don’t know what started that as I’m very careful with Sun exposure.  Was taken off it for 1 wk till the itching stopped and the horrendous rash went down and have been okay since.

    As yet I don’t need oxygen and go to the gym a few times a week and spend roughly 1 and 1/2 hrs per visit. Treadmill, bike and chest expansion machines.

    I was not informed as to the severity of my IPF or consulted as to which drug was better. I do know that Esbriet costs a small fortune here in NZ but thankfully it is covered by our NHS.

    But the cough is still there. Summer has now started so that should improve.

    No real problems except I have gone off alcohol and can only manage about 1 glass per week.

    I read this column every week with great interest.

    Thanks

    Sheila.

     

     

    • mark-koziol

      Member
      December 5, 2019 at 4:32 pm

      Hello Sheila, thank you for sharing your story. I am happy to hear you are doing well. It appears you have an exceptional exercise routine in place. I am happy to hear you are reading and commenting on topics. It’s people like you who share their stories to other members that make our forum a highly viewed and successful forum. Enjoy your summer as my winter has started several weeks ago. Take care, Mark.

  • paul-caden

    Member
    December 15, 2019 at 11:04 am

    Stu is right , having latest replies at start would be better and save time scrolling down

  • paul-caden

    Member
    December 15, 2019 at 1:37 pm

    69 yrs young, in top shape until now, I will be starting Esbriet later this week and am quite nervous. Was diagnosed early Fall w IPF. Was going to take Ofev until I read this article (in French) from a VERY respected non pharma influenced, European website;

    https://www.prescrire.org/Fr/202/1843/56008/0/PositionDetails.aspx

    Basically it says; for 2 yrs now they say don’t take Ofev (no mention of Esbriet) as risks outweigh benefits.

    Will post again after a couple weeks on meds, the brave folks (including the monitors)  in this forum are encouraging. Merci to all.

  • mark-koziol

    Member
    December 15, 2019 at 1:44 pm

    Hello Paul, thank you sharing the link. Good luck with your anti-fibrotic regimen. Keep us updated on how your body is reacting to the Esbriet. Best wishes, mark.

Page 7 of 8

Log in to reply.