• Charlene Marshall

    Member
    February 12, 2021 at 11:01 am

    Hi @pammckee

    Welcome to the forums! I’m glad you found us, though sorry you have to be here with a new IPF diagnosis. I did want to chime in quickly to assure you that the 3-5 year prognosis is not for everyone! Actually, that data was released before the anti-fibrotic medications were approved by the FDA for use to help slow the progression of IPF, and as a result, are very outdated. I know many people who have long exceeded that 3-5 year prognosis, not only living past it but not even requiring oxygen within that timeframe. Does this help?

    Feel free to write any time and ask us questions. This is a wonderfully supportive platform!
    Charlene.

    • rheal

      Member
      February 24, 2021 at 12:58 pm

      I recently had the same discussion with my Respirologist. I was diagnosed IPF ( they believe familial) 2017. Have been taking OFEV. My PFT is every 6 months with an xray every year. My xray shows no advancement of the scarring and my #’s on the PFT have not decreased. I am not on oxygen. But the effects of this Disease are ever present.  I have one brother and one cousin also diagnosed with IPF. My brother is recently diagnosed and my cousin is at 7 years. My cousin is on OFEV and oxygen.  My mother , three aunts and one other cousin (all deceased) all had IPF. They were dealing with this disease before any drugs were available. My mother and aunts all surpassed the 5 year mark ranging between 7 and 11 years. Only 1 was on oxygen.  My other cousin though passed while waiting for a lung transplant at 3 years.  It just goes to show that it certainly does mean that we all are individual and subject to the fate of not really knowing. I am grateful for being here, walking , talking and still breathing :-). And have the determination that whatever they say the expectancy may be…they will still be wrong. We have a truly awful disease but we are not alone in this world with our plight. I truly hope that you all surpass any estimate and you all live your life to the fullest and happiest that you can make it, given the hand you have been dealt. Cheers to you all.

      • mark-koziol

        Member
        February 24, 2021 at 7:27 pm

        Hello Rheal, thank you for sharing your story. Please take care, mark.

      • jackie-kalina

        Member
        February 25, 2021 at 2:30 pm

        You are a weath of knowledge and hope. Thank you for sharing.

      • mkcole

        Member
        January 2, 2023 at 9:57 pm

        Hello everyone my name is Michael/ Mike and I’ve been on OFEV almost two years. I also have a PFT test every 6 months. I use oxygen almost all day.I try to do as much Puluminary rehab as possible. I’m open to suggestions. Thanks

      • darlene-cochran

        Member
        January 11, 2023 at 5:17 pm

        Hello Mike,

        I am glad that Ofev is working for you.  I have friends with Pulmonary Fibrosis, both IPF and other designations and many of them are doing well with Ofev and Esbriet.

        I had a short term on Ofev and then switched to Esbriet due to the complications.  Esbriet worked well for several months then my liver was impacted (those blood tests are vital) and I had to leave Esbriet.  So currently not on any meds.  Still, all is going OK.  Diagnosed in 2019, four years after it was originally on a 2015 x-ray but missed by the radiology team.  So, if you assume that I was with IPF in 2015 then I am now into the game entering my eighth year.  I am still classed as moderate.  I use Oxygen at nite and during the day with exertion.  I am able to read, watch TV etc at room air and maintain mid-nineties.  I use Oxygen at 2 when sleeping and between 2 and 3 when doing chores in the house or yard or walking/exercise.   I am slower than before but still manage to live alone, drive, and shop with some assistance.  Love the little cart I drive at the market.  The key to this being satisfying was to change my expectations and to be thankful for what I could/can do rather than fuss about what was!  I find that life is just fine even if you cannot hurry up and get there.  Actually, it is a bit more relaxing this way after all I am now in my 8Os  so I give myself permission to do whatever I want whenever I can.  Adapting to this new lifestyle was a challenge and now it is just part of life.  I feel I still have some time ahead of me as long as I avoid accidents or other risks.  So based on that I am living well beyond the life expectancy for a woman living in the USA!  God is helping me keep this in perspective so that I can enjoy life to best of my ability.  I hope you find peace in your journey; we all have one and it is better to learn to ride the current then to paddle up stream.  Happy 2023 to all of you!

      • gordon-b-sandmire

        Member
        March 9, 2023 at 5:25 pm

        Darlene, Sounds like my life. I think we’re both thankful for still being here in our 80s and enjoying life the best we can. Sometimes my o2 goes lower than it should but I try not to stop it from doing what I want. Hang in there!

      • cheryl-w

        Member
        October 26, 2022 at 8:59 am

        Good Morning.  I was diagnosed in March with IPF & ILD.  I never heard of these diseases let alone ever think I would have a rare incurable illness especially at 59 years old.  Hearing this news was very hard for me to swallow.  I’ve since made progress.  I was on Prednasone for 2 months i started tapering off 11 days ago .  I was put on oxygen at the same time and still am on it . I will be starting Pulmonary Rehab soon hoping that will help me eliminate the oxygen.   My O2 levels drop with exertion from 98 to 90 sometkes 88 with oxygen.   I’m waiting to receive my prescription for Pirofedene.   They say that medicine really helps slow down the scarring process.   I glad I joined this group I like hearing stories about others having the same illness as me.   There is hope for every one of us .  I’m going through this with a positive attitude and determination.

      • Debbie k

        Member
        May 16, 2023 at 9:22 pm

        Hello Cheryl

        Glad you’re doing well. I’m in my 5th year with PF. I was misdiagnosed for the first two yrs. Long story. I also have emphysema. But was told my main problem is the PF. Just wanted to ask you the drug too going to take I’ve not heard of is it a newer one. I was on Ofev but had too many side effects and I’m taking a break. I developed skin ulcers often and they weren’t healing. After 5 months they are healed. I’m deciding if I want to try the other drug. Would like to hear about the drug you’re going to try. I had a lot of other side effects also. I had to get off. I’m concerned if the other drugs will be the same way. If u have any info on your drug. I would love to hear. Thank you and Good Luck. Blessings to you.

    • kim-morrison

      Member
      January 5, 2023 at 2:48 pm

      Yes! My mom survived 10 years post diagnosis! She had a very positive attitude. I am 3 years post diagnosis and I try to keep her positive attitude. As a retired nurse I can truly say being positive is a key factor in longevity. I’ve seen patients with same diagnosis. One very positive attitude and the other had a very negative attitude. All patients with good attitudes did much better with a better survival rate. Hang in there! I am praying there is a cure soon.
      ❤️????????❤️????????

    • calicus

      Member
      January 19, 2023 at 2:17 pm

      I received the same time frame over 4 years ago.  Then, I changed doctors and it is a whole different story.  As stated by other, the 3-5 is based upon old data.  My doctor confirmed this information.  My tests have all remained stable and not on oxygen.  Only Ofev.  My doctor told me not to worry about time.  Research is ongoing.  Chin up.

    • nina-merendino

      Member
      January 24, 2023 at 3:08 pm

      I may have said this before but I was diagnosed in 2018. It is now 2023 and still no cough or SOB. I researched myself and take zinc and a chinese herb Teavigo on Amazon, red light therapy but don’t have the IV. I refinanced my house to put in a swim spa because I have another disease that currently is worse, called ankylosis spondylitis where my bones are growing together. I am in pain 24/7 so thats why i do aerobics and swim in my back yard. I missed my last half yearly tests but after this next one I don’t see the need to go unless i start to lose weight, am sob or cough! I wouldn’t know I even have this if it weren’t for the bronchitis. How many people are walking the planet with this and don’t know it.?? Get the book called mind over Medicine. I also due meditation every night with U tube and healing at a cellular level. Nina PS. Change doctors if they tell you 3-5 years!!! I am at 4 .

    • kim-morrison

      Member
      March 9, 2023 at 6:13 pm

      My mother actually survived 10 years from diagnosis. She passed away at 84 years of age. I was diagnosed 3 years ago. So far I’ve only had a slight worsening. I began taking haritaki that I get on Amazon. The University of Alabama did a study on mice and Haritaki reversed the scaring from PF. I started taking it one year ago. My symptoms have significantly improved. I had my first CT scan since I started taking it just today. My results should be in early next week.
      Best of luck to you!! 🙏🏻🙏🏻

      • anonymous

        Member
        March 9, 2023 at 8:59 pm

        Kim, can u send a link to that? I cant find it through google. Thank You!

      • kim-morrison

        Member
        March 9, 2023 at 11:11 pm

        One article is titled “MDM4 Protein May Help to Treat PF by Clearing Cells That Drive Fibrosis” on https://pulmonaryfibrosisnews.com/news/mechanosensitive-protein-mdm4-potential-pf-treatment-study/?cn-reloaded=1
        This article refers to chubolic acid which in powder form is called haritaki. It comes from a tree in India and is called the miracle drug. I read an article a year ago that stated the PF was reversed in mice from a University of Alabama study. A friend of my cousins works at the lab in UAB and she told her to tell me to start taking it. Triphala also contains haritaki and is one I may begin taking. I am by no means suggesting anyone should take it. I just am trying to inform people so they can do research on chubolic acid/ haritaki and talk with their Dr for advise
        I hope this helped I will look for the other article and send it if I find it.

      • anonymous

        Member
        March 9, 2023 at 11:33 pm

        Thanks Kim. I ordered some from Amazon after reading up on it and making my own decision. It claims to be a beneficial supplement so why not. Also just started low dose zinc and NAD+. It’s important to note that many things have been cured in mice that didnt translate in people. But, who knows!  Be interesting to see your CT result. I have one and PFT next month I’m kinda dreading, but really need the data.

      • kim-morrison

        Member
        March 9, 2023 at 11:46 pm

        I agree with you! I’ll be praying for good results from your test. I figured it won’t hurt to try what may help. I’m also taking zinc, vitamin D, and others.

      • kim-morrison

        Member
        March 14, 2023 at 3:34 pm

        My CT showed minimal shadowing. Last year it showed moderate shadowing!!

      • anonymous

        Member
        March 14, 2023 at 3:57 pm

        Congrats Kim!  Was hoping for you to get a good result. Do they also check your PFT? In my case they are watching the DLCO.  Also, how long before you think the Haritaki made any difference in how you feel? My lungs feel uncomfortable a lot and the cough comes and goes.

      • kim-morrison

        Member
        March 14, 2023 at 4:42 pm

        Thank you!!I felt a difference within a few months. My cough subsided quite a bit and I didn’t get very short of breath anymore. I only use my rescue inhaler once in a blue moon. Don’t know if the haritaki or prayers are being answered. I personally think the prayers lead me to the haritaki. I think it’s both! I pray you get the same results!!! 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
        I have my next PF test in two weeks
        If you’d like to email me it’s [email protected]

      • pam-maguire

        Member
        March 24, 2023 at 2:54 am

        Hi Kim, I’m interested what your doctor said about the reduction in shadowing? Thought current medications available only slowed scarring not reduced? Or is it a different thing?

        Pam

        Xx

      • kim-morrison

        Member
        March 24, 2023 at 10:29 am

        Pam
        He really didn’t have much to say. The medication does not reverse scarring. I am taking an herb from India that I believe has improved the scarring. Being a Dr based on science, I don’t believe he really advocates natural remedies. I take haritaki which the University of Alabama studied the use of it in mice and it showed it reversed the scarring. I am NOT a Dr and am NOT suggesting anyone should take it. This was a personal choice of mine to take along with the Ofev.

      • anonymous

        Member
        March 25, 2023 at 9:54 pm

        hi kim, what haritaki dose do you take?  I got 750mg and take one a day.

      • stephen-b-strum-md

        Member
        March 26, 2023 at 10:07 am

        Kim & Others,

        This forum is outstanding.  I have always felt that the resource of human-to-human has gone essentially untapped.  I try to encourage dialogue with my patients between themselves and also to have meaningful dialogues with their physicians and all healthcare personnel.  Sadly, medicine for the most part has become McMedicine. I, as an MD, and as a patient with a rare disease (not IPF but just as rare) know what almost all of you are facing.

        You must be your own best advocate.  And getting insights from others who are motivated and are committed to healing is so important.  Moreover, I learn so much from listening to patients– often a lot more than my colleagues who just do not seem to have time to be the MD (medical detective) that their degree implores them to be.  I consider myself to be the Charley Chan, MD or the Jack Webb MD.

        Haritaki, an Ayurvedic herb from India, is said to have anti-inflammatory effects and to reduce what is called senescence-associated secretory phenotype (SASP) in aging dermal fibroblasts. So what is Haritaki?

        A 2023 article by Bogdanowicz (here’s a link to my Dropbox file on this paper): https://www.dropbox.com/s/7r5dp7f43q66f7j/Bogdanowicz%2023%20Reduction%20of%20Senescence%20Associated%20Secretory%20Phenotype%20and%20exosome-shuttled%20miRNAs%20by%20Haritaki%20fruit%20extract%20in%20senescent%20dermal%20fibroblasts.pdf?dl=0

        says that Haritaki i.a. a standardized extract of Terminalia chebula.  I had already done a search on Terminalia a few years ago looking for ways to ↓ high uric acid levels relating to CKD (chronic kidney disease). The genus Terminalia includes T. chebula but also other species such as bellerica. The latter had a greater reduction of uric acid than chebula.  But T. chebula, as in Haritaki, was shown to improve the senescent phenotype created in human dermal fibroblasts (HDF) that occurred 14 days after exposure to ionizing radiation.  Those HDFs had shape (morphology) abnormalities (flattened and irregular cell shapes) as well as an abnormal ↑ in the enzyme beta-galactosidase + over-expression (oE) of SASP genes. Moreover, the inflammatory cytokines IL-1β, IL-6, and IL-8 along with CXCL1 and CSF3 were seriously ↑.  Other abnormalities were also noted.  Read at least the abstract in the full pdf provided.

        My real wish is that those of you well enough and versed in computers might form subgroups and network to get really excellent findings to spur any investigation of novel therapies such as Harataki.  But the same with the current two major drugs vs. IPF: pirfenidone (Esbriet®) and nintedanib (Ofev®).  I am doing that on my computer hard drive and focusing on the peer-reviewed literature.  But here, on this forum, there is a wealth of human experience that needs to be abstracted into some format that is easily accessible/digestible/ and implementable.

        I am an voracious reader but the amount of info on Pulmonary Fibrosis News would have me reading all day long, 24/7.  I wonder if a pilot approach to this could occur with a focus, for example, on Terminalia chebula (aka Haritaki).  Examples:

        • Are there any publications on the lab findings found in human dermal fibroblasts (HDFs) as in the Bogdanowicz paper that are common to that of IPF?

        • How many patients on this forum with a diagnosis of IPF are using Haritaki?

        • At what dose and frequency?

        • Did your MD do baseline pulmonary function tests (PFTs) prior to Haritaki?

        • Do those of you who are up and walking perform a six-minute walk test (6MWT) as a baseline prior to, and during or after “x” many weeks of Haritaki?

        • What are your sources of Haritaki?  Any side effects?  How pure is the product you are taking?

        One paper I have states that Terminalia chebula Retz is the only botanical source of Haritaki.  Does your supplement state that is what you are taking?  I have studies herbal compounds and published on one of them called Serenoa repens (for those with lower urinary tract problems).  The THL (take home lesson) was that a standardized lipidolic extract of a specific dose was needed to reliably provide improvement in lower urinary tract symptoms (LUTS).  Standardization of a natural product is often needed, especially if we are considering this as a treatment or adjunct in any illness considered significant.

        Lastly, here is a Dropbox link to a paper on Haritaki and its varieties:

        https://www.dropbox.com/s/550863xt7c1anoz/Ratha%2013%20Haritaki%20%28Chebulic%20myrobalan%29%20and%20its%20varieties.pdf?dl=0

        I hope this helps.  I am currently learning a lot here and using it to help one of my patients with a diagnosis of IPF (to be confirmed) who has been on pirfenidone (Esbriet®) since September but is not doing all that well.

        Stephen

      • kim-morrison

        Member
        March 26, 2023 at 11:11 am

        Hello Sir
        I appreciate your response concerning haritaki. I wish more Drs. would consider natural substances to use along with traditional western medicine. I presented my pulmonologist with the research article from the University of Alabama treating mice with haritaki. The results were that it reversed the scarring. Unfortunately he wasn’t very receptive. After my own research I decided to begin taking it. I take two 2250 mg each morning along with Ofev. I don’t think there have been any studies with humans and haritaki. I would love to see a study done on it. The first three of my CT scans showed moderate scarring with glass opacity. The second one showed slight worsening. My most recent one was done two weeks ago after taking haritaki for one year. The results showed minimal scarring. I do understand that each radiologist interpretation can be different. My Dr wasn’t optimistic that it had improved. My LF test have been good and I have one scheduled for tomorrow. My mother, her sister, and a cousin of mine all passed away from IPF. I can’t help but think ours was hereditary as we do have autoimmune disorders in the family. I have let people know my own personal experience and belief in haritaki noting that I am NOT a Dr and patients should do their own research and talk with their Dr.
        My prayer and wish is their will be a cure found as I do worry for my children and grandchildren being at risk due to the family history.
        Again thank you for your response
        Kim

      • pam-maguire

        Member
        March 27, 2023 at 10:01 am

        I also believe herbal remedies may help. I am keeping a keen eye on trails taking part in Australia at the moment safety testing on a new product designed to block Interlukin-11 and in mice it stopped and reversed scarring. This is my hope for my husband and PF community

    • les-viegas

      Member
      March 9, 2023 at 6:42 pm

      Hi Pam,

      I am pleased that so many people shared their stories with you and am sure that will give you a lot of hope. For what it may be worth, I am also a IPF survivor. Was diagnosed with IPF in 2009 and given 3 years to live by one of the large teaching university hospitals in the country. I was determined to defy the odds and am happy to report that I am living a vibrant  full life at 80 years in sunny Florida with a fully functioning 9 year old single lung transplant that is well cared for by the experts at Cleveland Clinic. Bottom line – unlike in 2009, you have many options to choose from today and please keep the faith. Best wishes.

      Les

      • kim-morrison

        Member
        March 14, 2023 at 4:38 pm

        Thank you!!I felt a difference within a few months. My cough subsided quite a bit and I didn’t get very short of breath anymore. I only use my rescue inhaler once in a blue moon. Don’t know if the haritaki or prayers are being answered. I personally think the prayers lead me to the haritaki. I think it’s both! I pray you get the same results!!! 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
        I have my next PF test in two weeks

      • stephen-b-strum-md

        Member
        April 19, 2023 at 9:04 am

        This is a 3-wk follow-up

        I have 191 papers (most  I have read), on the topic of  Terminalia chebula, known in India as Haritaki (and other names too).  Your post, Kim, led me to the paper, J.; Yang, S.-Z.; Zhu, Y.; et al. Targeting mechanosensitive MDM4 promotes lung fibrosis resolution in aged mice. Journal of Experimental Medicine and this publication is a key paper for all involved with idiopathic pulmonary fibrosis (IPF) or lung fibrosis due to any cause. It cites many 4+ important articles and cites the work on chebulic acid, one of the constituents of T. chebula (aka Haritaki).  You should provide the cited reference above by Qu to your pulmonary doc.  He is in the Department of Medicine, Division of Pulmonary, Allergy and Critical Care Medicine, University of Alabama at Birmingham, Birmingham, AL

    • carlene-a-chamberlain

      Member
      May 16, 2023 at 9:14 am

      Well well, here I am!  Diagnosed in October of 2022 after coughing, SOB, for a number of years and being told I had asthma even after chest x-rays presented these sick lungs of mine.  I was denied a lung transplant just last Wednesday after months of testing. I’m on 02 since October 24/7, and in Pulmonary Rehab. Muscle uses less oxygen I’ve been told.  Also on OFEV and nothing else.  I too was told I have 5 years to live.  My friends have said one of my lung doctors is “empathy challenged”. But there it is.  I was so focused on getting to the end of the lung transplant testing and being listed, I was preparing for this since October.  I’m here to read about others like us, and how to carry on and live the life we have been dealt with. I am 68 years old and not sure how long I’ve had pulmonary fibrosis. Thank you for sharing and I learn more each day.

    • alex-marion

      Member
      October 13, 2023 at 2:16 pm

      Hi Charlene:

      I am very lost, and feeling living in an altertaive reality, since my wife got diagnosed in May this year. the 3 to 5 years, is kind of wht i can see everywere, unless lung transplantation makes it in to the equation. Only 40% of patientes responds well to Ofev, or Esbriet, that is a lot better than 20 years ago, and looking at the new research and possible new medication, makes me fearfull and hopefull at the same time.

      Fortunatly my sweet heart still 100% emotionly and physically, enjoing every day like her last, as she says all the time, i wish i could do that. I spend endless hours resarching and looking for options, but, i am running out of literature to read.

      I request a second oppinion since she got covid in 2022 and pneumonia in feb 2023 , but the dr. is convinced is IPF, here in canada I asked for a second opinion at Toronto Central Hospital, but they are telling me 10 to 12 months; so, more anxiety for me.

      This forum is so far my only connection with people that i can share, since, i find many ideas and concepts that i can explore. One thing that still puzzle me is the progresion,and, since she is almost asymptomatic ( she seldom cough during the day) and does have a healthy life style including dayly excersise, work, and house chores, also enjoing the grand kids , really put a smile on her that brings life to everyone arround her.

      Our dr, send us for a PFT an 6mw last august and her numbers aparently were excelent, FVC 80% and Delco 55% , he recomended the anifibrotics, but, say it may be to early, he want to do another 6mw and PFT in January and revisit in februeary.

      He also say somenthing about lung transplant but is to early , and , due to her age 74, it may not qualify when the times comes, that, really makes me angry, I fell discriminated by age, and not by what Dr. should do that is consider bilogical age not numerical age. I have other alternatives, of going abroad maybe USA and get other oppinion? is there any advise can you point me to, to seek another alternative.

      I read many people here living way pass the 5 years and without the need of oxigen, medicine and with GOD on their side.

      Alex

  • karen-martin

    Member
    February 16, 2021 at 4:23 pm

    I am very glad Pam asked the question and got Char’s response!  I have also heard that 3-5 year prediction and worried about it.  Of course, when you consider almost any disease and think about the ongoing progress in treatments, that is likely the case almost every time.  It is very reassuring to hear you “say” this right out loud here.  🙂

    And, welcome, Pam.  I was diagnosed in November 2017 and have been taking Esbriet since August 2019.  Still here and kicking, although maybe not at the same rate as before, but happy to have this forum to turn to for information and support.

    Karen

  • greg-ford

    Member
    February 16, 2021 at 5:57 pm

    My pulmonologist currently has two ipf patients who were diagnosed 10 years ago.  The longest patient case he has ever had is 17 years.  I have interpreted his guidance to believe that the disease acts differently in different people.  It is also dependent upon how well you take care of yourself and any other ailments you might have.  I myself was just diagnosed last August 2020.

  • mary-ward

    Member
    February 16, 2021 at 7:45 pm
    1. What reassurance Char and Greg & Karen ! Thank you ?
    2. It is a great uplifting thought to hold
    3. I work hard to keep a positive attitude
    4. because as a retired RN I have seen the power of positive thinking and taking the best possible care of ourselves
    5. stay safe everyone and take care
    6. Mary W
    • Charlene Marshall

      Member
      February 16, 2021 at 7:59 pm

      Hi @mary-ward

      I’m so glad to hear some of this dialogue and the responses have been helpful! Of course no one can say for sure or speak to our life span with any sort of certainty, but I agree: positive thinking and optimism can go along way in navigating life with a chronic illness for sure .Taking care of ourselves both physically and mentally is equally important 🙂
      Thanks for writing,
      Char.

  • denny

    Member
    February 16, 2021 at 9:41 pm

    There are over 400 types of interstitial lung disease so that is why some will have a shorter life span than others. I believe that I have put mine into remission or stabilized it for over 4 years now. My IPF is nonspecific pneumonitis.

    Denny

    • mark-koziol

      Member
      February 17, 2021 at 8:22 am

      Hello Denny, you make a great point. It’s also pleasing to hear when a member has remained stable for such a long period of time. Breathe well today my friend! Mark

  • paul-caden

    Member
    February 16, 2021 at 10:07 pm

    I was diagnosed in August 2019 and have been taking Esbriet since Dec 2019.  ”Still here and kicking, ” like Karen  have less energy than before, but happy to have this forum to turn to for information and support, as well. Do lots of outdoor sports to keep the body working, helps</span></span>

    • mark-koziol

      Member
      February 17, 2021 at 8:06 am

      Hello Paul, you keep kicking and stay as active as you possibly can. Have a great breathing day! Mark

  • mark-bowden

    Member
    February 17, 2021 at 12:47 pm

    Hello, Pam and others – I have been blessed. When I was diagnosed in the spring of 1996 (25 years ago), I could not take more than a few steps without being breathless. I could not shower as the warm, moist air made it impossible to breathe.  I coughed so much my throat was raw. I was prescribed a steroid. The pulmonologist gave me 6 months to a year to live; said my lungs were “filling up fibrosis.” I was very discouraged with my outlook, only compounded by  suddenly facing family issues  and upheaval in my job. The stress was incredible. I was encouraged to exercise, which was difficult.  I pushed myself to bike and walk. I took breathing tests and image studies frequently, and persevered.  This went on until 2012 when my pulmonologist retired and passed my case management to my primary care provider, who took image studies annually. Because I am a recent prostate cancer survivor, my PCP suggested I get a consult from a pulmonologist to establish a new baseline on my ILD.  Consequently, I was prescribed OFEV, although I do not present common symptoms of the disease.  He said the medicine  can slow the disease, but he did not/ could not  provide an estimated time of my demise. This caused me to do more fresh reading about ILD, and I found this Wonderful forum. Clearly, some of these diseases move incredibly fast, while others are slowpokes (that’s good). If a person who is newly diagnosed is able to exercise, I think this helps lung functionality, but I’m no medical professional so listen to you doc.  Nothing can stop the disease. I’m 68 and am walking 3 miles a day.  As for stress and anxiety,  i have worked hard  to manage theses things that weigh down my attitude.  That said, Iam still dealing with the sticker shock spurred by the price of the prescription. I don’t know what God intends for me. I am grateful for every day.

    • mark-koziol

      Member
      February 17, 2021 at 1:52 pm

      Hello Mark B., what s great story. May you continue to persevere. So happy to you are doing well. Thank you for sharing. Mark

      • concerneddaughter

        Member
        May 11, 2022 at 8:59 pm

        My mom was just diagnosed with pf and I found this forum in hopes that I could learn something that seems to help her heal or get better. My mom was working right up till she just couldn’t go anymore and went to the hospital. She was there two weeks and they sent her home with her oxygen and medicine which I’m not sure what they have her on. I am gonna find out, I don’t live near her sadly and so my sister is helping take care of her. She had an appointment today and just the walk to the car and the drive there was to much for her. They almost sent her back to the hospital cause she was collapsed in the hallway. Any advice will be much appreciated. She seems to be doing much better since she got home and rest and her oxygen was at the strength needed. I worry the Florida heat may not be good for her. Thank for any advice in advance. Best wishes to everyone struggling with this, my prayers and heart goes out but I am so glad to read that there is positive stories out there.????

         

      • christie

        Moderator
        May 13, 2022 at 2:50 am

        Hi Jamie, fellow daughter of PF mom here. Sounds like your mom’s case is pretty similar to how my moms was. She was eligible for a lung transplant and is doing well three years on from that. Doctors might bring that up for discussion with her, and I’d be happy to chat with you about making that choice, caregiving, or whatever you need as you go through this with your family. It’s a good thing your sister is able to be there and help take care of her. The more hands-on, the better until she recovers some. Sounds like doctors are on to a good start with oxygen and medications but if she is feeling ill enough that she’s already been hospitalized, best to keep a close eye on her oxygen saturations and other symptoms. Acute exacerbations of this disease can come on quickly and end poorly. Not trying to scare you, just want you to err on the side of caution rather than a “wait and see” approach. If she isn’t yet under the care of a pulmonologist, specifically, get her in to see one. General physicians are usually not too knowledgeable about this disease as it is rare.

    • paul-caden

      Member
      February 26, 2024 at 10:03 am

      hope you are still doing well Mark That was a very touching story you had. As for me, being a free thinker i depend on science to come to my aid and indeed pirfenidone has been relatively easy for me to take and has protected me very well for the past 4 and 1/2 years. At the age of 74 i am mentally ready to face a return to stardust and glad to have had a happy marriage for 50 years and two wonderful kids.

  • pam-mckee

    Member
    February 18, 2021 at 2:14 pm

    Reading these posts are so helpful and uplifting. I’m 71 and in pretty good health so it helps to know there are others living longer than expected.
    Years ago my husband was given six months to live with cancer, but he lived six years.
    My dad was told he had five years to live with heart failure and he lived 20 years.
    Hope is a wonderful thing.

  • denise-anton

    Member
    February 18, 2021 at 2:20 pm

    Sorry about your diagnosis Pam. I too have asked the question, but can not get anyone to provide realistic statistics, which must exist somewhere. “Everyone is different”is true, but there must be some information that will help those with IPF evaluate how to plan their future. Rather than discourage me, it would help me feel informed and therefore empowered. Clinical trial reports from many countries currently use 3-5 yrs in their reports. If 5-9 yrs with the two fibrotic drugs is a better figure, why is it not published?
    Stay strong, optimistic, and positive!

  • steve-blake

    Member
    February 18, 2021 at 3:27 pm

    I have IPF.  I was diagnosed in 2012 and began taking Ofev in 2018.  I went on oxygen for sleeping in 2018 and use it if active and exercising.  I too received the 3-5 year and it was scary.  What you have to understand is that everyone is different and there is no way to predict.  I know totally ignore the 3-5 year guestimate and feel great and plan to keep on for many more years.

  • janet-haynes

    Member
    February 18, 2021 at 3:46 pm

    Welcome Pam to the forum.  My husband was diagnosed 4 years ago and we read with dismay the 3-5 life span.  He has been taking Esbriet since being diagnosed, sees his pulmonologist every 6 months and is in great shape – no oxygen.  I too wish that the outdated information would be remove especially since there is now medication that works to slow the progression of the disease.  Ignore that info – we are!!!

     

  • rthorntonbresnan-net

    Member
    February 18, 2021 at 5:10 pm

    Hello everyone. Just reading all the predictions everyone has been given. I too was told 2-5, which put me into a shock. All I could do was set there with my mouth open. It will be 1 year this next month. I am trying to stay active but the cold is keeping me pretty much inside. I would love to go for a walk, but the cold, even on a short 1 block walk to the mailbox, freezes my oxygen line. With my fake knee, the cold freezes it up and I cannot move. So, the boring inside of the house reminds me of the hospital room. I do the exercises I did in the hospital to keep some movement. My wife asked me the other day if we are going to do the landscaping we had planned on doing last spring before I got hospitalized and I told her  I sure hope so. Working in the yard has always been my fun thing to do. So, we’ll see if it comes to pass. Everyone, have a great weekend and yak at you later.

  • ben-robinson

    Member
    February 18, 2021 at 6:12 pm

    I made it 6 years and was supposed to die in two. Even though they tried to kill me without trying to with their negligence. Take the diagnosis and prognosis with a grain of salt as cited by the gentleman above.  Everything is not IPF at all.  These doctors…..

  • pdean

    Member
    February 18, 2021 at 10:01 pm

    I’m an 83 year old female who was diagnosed with IPF in 2008 and was given 2-5 years. Surprise!!!  Here I am still kicking. I have slowed down this past year and have had some progression and have to decide whether I want to go on Ofev.  I’ll probably try it but if the side effects make me too sick I’ll just take my chances.  I still feel fine just can’t do the things I could do a year ago. I have a cough and I’m on oxygen 24/7.   Once Covid is over  I plan to get out and get active again. Oxygen makes it possible to stay active for me. Stay positive!!!!

  • ida-anker

    Member
    February 19, 2021 at 12:08 pm

    Thanks for asking the question Pam, and for all uplifting comments. The 3-5 year is the first information you get after being diagnosed, both online and also all information from the hospital. It`s so scary so getting balanced information is very helpful. I try to keep a positive attitude, eat properly and work out as much as I can. This group helps a lot, so greatfull to be part of it. I understand that a protein rich diet is the best. Any experiences in terms of diets? Stay healthy and have a great w/e. Best regards, Ida

     

     

     

     

  • manzurul-khan

    Member
    February 21, 2021 at 11:16 am

    I am a 67 year old male and was diagnosed 4 months ago. I have resisted my doctor’s advice to start taking Ofev or Esbriet in recent weeks. He thinks I should choose one of the 2 to avoid an acute progression since it’s in early stages now. I plan to see another doctor at Baylor College of Medicine before I do that. I am worried about the side effects of both of these drugs. I made big dietary changes in recent months and focus on anti inflammatory products such as ginger, turmeric,  cinnamon, green tea and EGCG capsules. I avoid coffee, milk, tomatoes and red meat. I also work out at least 5 times a week. My oxygen level is normal (high 90s). This group has been a godsend for me. You have given me inspiration, hope and support I needed to be better informed. Thank you all.

    • mark-koziol

      Member
      February 21, 2021 at 11:37 am

      Hi Manzurul, you have a great outlook. You are doing everything right including getting a second opinion. Have a great Sunday, Mark

    • pete-besio

      Member
      February 23, 2021 at 6:45 pm

      @mhkhan93

      Manzurul,

      I too will be 67 in a few months, I was diagnosed last year, started Esbriet September or so.  My last two visits to my pulmonologist have shown steady gains in my pulmonary function tests.  Is it the Esbriet? Is it the fact that I have kicked my exercise routing up a couple of notches?  Is it the Galapagos GLPG 1690 clinical trial I was involved in? No one can say.

      I am not pleased to be on any of these drugs.  During discussions with my Galapagos Clinical Trial nurse, I shared this thought with her, and because I was showing improvement, I indicated that I was considering getting off these meds.  Her response was interesting: her opinion was that IPF should be treated in a similar fashion to cancer, in that we should throw everything we have at it in the interest of prolonging quality of life.  I thought that was interesting, and gave it great consideration, and have decided to continue with the path I am on, without the Galapogos trial as it has been discontinued.  I have read and heard in many places that one can’t predict the rate of decline for IPF patients, but that often once the decline begins, it is steep.  This was part of her reasoning.

      I will continue with Esbriet.  The side effects are tolerable, the expense isnt’, although I have the good fortune to be able to absorb that expense.

      Everyone reacts differently to IPF, so I have been told.  I am going to continue to fight it with every tool I have.

      Good Luck!

  • carlo-de-pellegrin

    Member
    February 23, 2021 at 11:47 am

    Great positivity here! thank you…

    I need a target. i am 73 years old ( shh,  don’t tell anyone ) diagnosed with IPF September, 2020 and went on Esbriet. Do have side effects from the Esbriet, but want to know how others are doing walking ( now on a treadmill in doors because of the cold )

    I walk for 30 minutes at 2.8mph on a slight incline ( no.4 ) and occasionally get down to 90 O2, when I ease up for a bit and then continue. What are others doing? What should be my target?

    thank all again

  • pete-besio

    Member
    February 23, 2021 at 6:54 pm

    Pam,
    Esbriet received its FDA approval January 11, 2017, OFEV in 2014. Both pretty recent. My pulmonologist told me the 3-5 year expectancy is a bit of an artifact from the days before either of these drugs were available. As you can tell from this forum, there are very many people that have far exceeded that expectancy. Keep educating, keep positive, and don’t let it get you down. I think we all plan on hanging around longer than 3-5!

  • john-garner

    Member
    February 23, 2021 at 8:24 pm

    Great topic! I was diagnosed with IPF in July of 2020. I have been on Ofev for 2 1/2 months with very little side affects. I think the reason I have minimal side affects is that I  take my pills as close to 12 hours apart as possible. When I was first diagnosed with IPF, I was pretty down after reading about the life span on the internet. But after reading comments from others on this forum, my outlook turned positive. I’m going to live as long as the good Lord wants me too. And I am going to live as good of a life as possible. I don’t take breathing for common anymore. I thank God everyday.

    • mark-koziol

      Member
      February 24, 2021 at 7:43 pm

      Hello John, you have a wonderful positive outlook. Taking your medicine on time helps with the efficacy of the medication. You are right about the gastric effects. Some people do everything right, eat healthy and eat the small meals and have disheartening gastric effects. Others can eat pizza and wings and the medicine doesn’t have a negative effect on your digestive system. Take care, Mark

  • john-garner

    Member
    February 23, 2021 at 8:35 pm

    P.S. After thinking about what I just said about taking my Ofev as close to 12 hours apart as possible, my just be in my head. I may just be one of the fortunate ones that have very little side affects from the Ofev. It’s all a little confusing.

  • steven-mason

    Member
    February 23, 2021 at 9:47 pm

    I assume that these life expectancy estimates are based upon real statistics. My father died from IPF in may 2003–and my recollection was that the 3-5 year window was what was contained in the literature back then. But so much of this is based upon when the diagnosis occured. My dad was misdiagnosed at the va –and on december 20 2002 was told by a private practitioner that he had end stage ipf. My point is that cases like his greatly reduce the prognosis–and back then there was no treatment. He was put on a drug to suppress his immune system (from the mayo) which hastened his demise. From reading this forum things have greatly improved.

    • mark-koziol

      Member
      February 24, 2021 at 7:50 pm

      Hi Steven, much of the literature still contains the estimated 3-5 years expected life span. I don’t know why they wouldn’t move to using a medium rather than an average for measurement. I do think many hospitals and institutions are trepid in their estimations until a large respected institution changes their numbers. I think a valid and reliable research study would facilitate this change as well. Thank you Steven for your input, Mark.

  • manzurul-khan

    Member
    February 25, 2021 at 11:28 am

    To Pete and all those who contribute,

    I have gained so much from your shared experiences. I feel I belong to a community who are caring, selfless and pulling for one another. I am in early stages and the journey ahead will be long, I hope. And from what I have learned here, I will benefit in easing my burden. I want to quote the words of our national poet, Maya Angelou, “I can be changed by what happens to me but I refuse to be reduced by it.”.

    Thanks, everyone.

  • john-sliwinski

    Member
    February 25, 2021 at 2:54 pm

    My local pulmonologist stated my life span would be 2-5 years. However after getting a second opinion at a Center of Excellence (Univ. of Pa.) and after they doctor there reviewed my lung biopsy I was told I had over 10 years plus. So far it has been 5 years and still on Esbriet and stable.  One thing to keep in mind sitting or lying around does not help. Find lung exercises to do and walk.  Depending on weather I walk 25k-40k steps per week. YOU can do anything.

  • mike-mses

    Member
    February 25, 2021 at 8:23 pm

    I was diagnosed in June 0f 2018 and told 3-5 years.  I probably had this in 2014 or maybe earlier.  Didn’t know until I went under for another procedure.  I was initially on oxygen when sleeping, but upgraded to 24/7 in 2019.  I am currently on 5 lpn pulse when out and 4 lpm when exercising.  I was put on the transplant list in January 2021 as my doctors wanted me to have the surgery when I was more healthy.  I will be 72 in June and have a positive outlook on things.  The 3-5 year prognosis is debatable, depending on when they actually catch this.  Stay positive and hope for the best.  Listen to your doctors.

     

    Mike Moses

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