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    • #25421
      Mark Koziol
      Participant

      Many members of the Pulmonary Fibrosis News Forum take Ofev. I recently read an article published by Pulmonary Fibrosis News detailing the long term side effects of Ofev. The article is titled, “Years of Ofev Use in Clinic Raise No New Safety Concerns, Study Finds”. This is good news for long term users of Ofev. As you would expect, the study found “non-severe diarrhea continuing to be the most common side effect.” Many of our discussions related to the side effects of Ofev involve gastrointestinal issues caused by Ofev and how we handle these. Many of our members engage in this discussion which offers help to our membership. 

       

      Occasionally, our members mention they need to refrain from taking Ofev because of elevated liver enzymes. A small percentage of users experienced this side effect. Bleeding was also observed in a small percentage of Ofev users. I have not heard of any member mentioning they have experienced this latter side effect. 

       

      The article is based on an article published in the journal Advances in Therapy. I recommend the reading of the embedded article. 

       

      If you have been on Ofev, has the progression of your disease been slowed down?

    • #25434
      John Weitner
      Participant

      Thanks for sharing this Mark – It is really assuring as I was concerned about long term use – especially on the liver.

      I have only been on Ofev for 3 weeks so cant answer your question. So far, I only had diarrhea once, and as long as I eat a decent amount of food, I am tolerating it very well.

      • #27033
        Craig Brennan
        Participant

        @mark-koziol

        Hi Mark I am a  year old male living in Northern NY (I not worried about going to hell as I’M told I already live there) and I was diagnosed with IPF in February 2012. It was by chance they found it after my attending physician ordered a c-scan with contrast as they could see enlarged limp nodes surrounding the lungs . I was living a normal life with yard work, golfing and riding my M/C until February of 2020 when I became short of breath. I was prescribed O2 at 3litres for 24/7 in June of 2020 and from there it has been a slide down for me. In October my O2 was increased to 3litres 24/7 and 4litres if out walking. I am still ambulatory but it’s challenging with the oxygen. I was prescribed OFEV 150 mg twice daily and started the med on December 21, 2020. Initially I had difficulty with the medication and had abdominal cramps with vomiting this stopped after I got control of the 12 hour separation of application of the medication. At first I took the morning one whenever I got up and sometimes this would only allow for 8 or 9 hours between doses, that’s a No No. Once I got into a regiment I was able to tolerate the medication well. I did have an increase in my liver enzymes  and my primary physician had me stop my statin medication which helped. To the future and beyond.

        Craig Brennan

        • This reply was modified 10 months, 1 week ago by Charlene Marshall. Reason: tagging
        • #27039
          Mark Koziol
          Participant

          Hello Craig, thank you for sharing. It seems we know the same people who able to tell our future about our afterlife. It seems you are doing pretty good. My hope is that you remain stable for many more years. In my opinion, I think completing a round of pulmonary rehabilitation would be beneficial to your overall health. If you are going to go this route please speak with your physician so they can prescribe orders. Take care, stay humorous,  and most of all stay active. Mark

      • #29887
        Brian Davy
        Participant

        I have been on Ofev for about 3 years ,initially I was taking the 150 mg but it was hard on the stomach ,reduced the dosage to 100mg twice a day still have some bad days but it is a lot easier on the stomach

        My last results showed that it had slowed the progression so happy with that !!!

         

        Brian

    • #25435
      Mark Koziol
      Participant

      Hello John, I am glad you found the article informative and helpful. Good to hear you are tolerating the Ofev. I know many of our members are apprehensive when they begin to take the medicine but it appears a good portion of members seem to do well on it. Take care, Mark.

      • #27034
        Craig Brennan
        Participant

        72 year old male living in Northern NY

        • #28432
          Dave
          Participant

          I’m new to IPF so I have a question regarding Craig’s post.

          If he was diagnosed in 2010 and Ofev was approved in 2016 why wait till 2020 and on the downhill slide to get on medicine. Not criticizing just wondering

           

      • #27379
        Craig Brennan
        Participant

        Thanks Mark and I meant to say I am a 72 year old male, although I think how I stated my age reflects how really older I am.

    • #25488
      Carol Dyck
      Participant

      Hello,

      I have been taking OFEV 150mg for 9 months now and have had blood test done monthly to monitor liver enzymes elevation .  There has been a ‘decrease’ in the progression of the disease since taking OFEV.  The only side effect that I seem to get from this drug is slight nausea around noon hour.  It lasts for about an hour, then disappears.

      All my life I have had normal blood pressure.  Whether it’s the OFEV or the disease itself, but my BP has slightly elevated in the last month to the point that I’m now on a very low does of BP medication.

      Hope this helps people who are apprehensive about taking OFEV.

    • #25489
      Mark Koziol
      Participant

      Hello Carol, it’s nice you are tolerating the side effects fairly well. It’s too bad about the nausea and increased blood pressure. Ask your pulmonologist about what he thinks is causing the slight elevation in blood pressure. I am curious to hear his answer. Thank you fo sharing. Take care, Mark.

      • #30352
        Kim Jacomo
        Participant

        Mark,

        My brother is having a horrible photo sensitivity to the Esbriet and is interested in switching to Ofev, however, he has a heart condition and has been warned that Ofev would not be a good thing to go on.  Have you heard anything lately of Ofev and heart isssues?

        Thanks,

        Kim

        • This reply was modified 4 weeks, 1 day ago by Kim Jacomo.
    • #26936
      Dana Kelley
      Participant

      Day 7 taking OFEV. After a week of taking and reading all I can about IPF, I am beginning to relax a little. Knowing it’s a very unfortunate disease to have, I do believe you need to be as educated as you can, but I’m not an educated person so to speak. I struggle trying to understand the medical terminology I find and look up meanings. So far I have no side effects, and since my anxiety has subsided, I must say I’m feeling really good. The only complain I have on here is not a lot of people are posting they can take the OFEV with not a lot of side effects and I must admit, this is what alarmed me at first. I’m walking a mile every day and have been for 2-3 weeks and seem to be able to breath better. I do better when temps are in the 50s. My diet is good and do eat 5 small meals a day, watching this very close. I’m so grateful for this site, thank you.

      • #26937
        Mark Koziol
        Participant

        Ho Dana, this is great news. You have the perfect positive attitude. Everyone’s case I’d different. We all have different experiences with ofev. I think you are approaching this period of your life magnificently. The physical activity, the small meals, and your diet. These protocols will enhance your quality of life. My hope is for your lung function to remain stable. There is nothing wrong with having to look up medical terms. I know I do it all the time especially when I’m reading medical research. You have a great breathing day! Mark

    • #26941
      Alan Jones
      Participant

      Hi,

      I have taken ofev because it elevated my BP.

      Alan

    • #26945
      Frank Loeffler
      Participant

      Having now been on OFEV for almost two years plus a clinical study medication termed as “Galpagos” for over a year, in the past 7 months I have noted both a slowing of my hair and nail growth as well as a slowing of healing of minor cuts and burns.  Previously my healing was very prompt and although the clotting and scabbing is prompt, the healing process has been tardy.

      Wondering if anyone else has noted these indicators?

      Thanks

      Fraank

    • #26949
      gaston
      Participant

      I started treatment with OFEV in July 2020 and had to suspend it due to side effects, mainly diarrhea. Now I will start again with just a daily dose for 2 to 3 months, with more antidiarrheal and diet support. The idea is to go back to 2 doses of the full treatment.
      I believe that this is a war for our health that must be winning battles with great patience but we must not neglect the quality of life of one and of the loved ones that surround us. Cheers, Gastón from Chile

      • #26957
        Mark Koziol
        Participant

        Hello Gaston, thank you for sharing. I hope with the change of dosage your body becomes more tolerant of the medicine. Cheers to you Gaston. Have a great breathing day today, Mark

    • #27044
      Jacki Baum
      Participant

      I was diagnosed in 2017 and began taking Ofev 150 twice daily on the advice of my Doctors.  They suggested Ofev since I live in the South and spend a lot of time outside, playing golf, walking, etc.  I experienced side effects of diarrhea and nausea that were just short of severe.  My dose was reduced to 100 twice a day and although I still experience diarrhea and some nausea it is not daily and controlled with medication.  My PFTs remain close to normal, and my 6 minute walk is above average.  I truly believe that Ofev has slowed the progression of my IPF.  I still play golf 3 days a week and do volunteer work that keeps me busy the rest of the week.  For me the side effects are controlled by diet, nausea medication and Imodium.  I have a great team of Doctors who have helped me navigate through this disease.

      • #27068
        Mark Koziol
        Participant

        Hello Jacki, I chose Ofev over esbriet for the same reason you did. Unfortunately, my fibrosis progressed and I subsequently received a lung transplant. My wish is for you to remain stable for many, many years. Please keep playing golf and stay active as possible. I can tell you have a wonderful attitude. Have a great weekend, Mark.

    • #27054
      Cheryl thomas
      Participant

      Hello to the group I enjoy reading everybody’s experience with this unfortunate disease. I was diagnosed June 2020 by a CAT scan following up on  a  nodule, not symptomatic at this time. Nodule is gone fortunately. But I started having scans in 2016 yearly and see that I have had it since then. I was swimming 3 x a week a mile prior to Covid for the last 3 years.   I have a pulmonologist at the University of Pittsburgh.  I wanted to start taking Ofev but he insists it would give me severe diarrhea and since I am not sick at this time he doesn’t advise it.  I think I will ask to try it since it sounds like it is helping most people.  I don’t want to wait until my PFT’s decline.  One breath at a time!

      • #27066
        Mark Koziol
        Participant

        Hi Cheryl, thank you for sharing. Your doctor may be following the protocol set forth by the pharmaceutical company. It’s good to hear you have remained symptom free. Try to remain as active as possible. It’s to bad you haven’t been to swim, which is considered an excellent cardio exercise. I hope you can get back to the pool soon. Take care, Mark

    • #27057
      Frank Loeffler
      Participant

      My year and three quarters since my IPF diagnosis and OFEV treatment has literally left me with no change.  I started a common script of 100mg 2x daily to test my side effect tolerance and then 150mg 2x daily with little side effects.  My pulmonologist at University of Kansas Medical Center advised that OFEV may have significantly slowed the progress of IPF to the point that my breathing tests have not changed at all.  I still maintain my prior levels of activity including but not limited to aggressive walking and weather permitting (summer) swimming.  An interesting point is that my early diagnosis was from a high resolution CAT and my pulmonologist strongly suggested NO FURTHER RADIOLOGY STUDIES for my protection.

      • #27065
        Mark Koziol
        Participant

        Hello Frank, it’s great you have remained stable. You are doing great. I always love to hear when a member shares their uplifting experience. Keep doing you, and have a great breathing day! Mark

    • #27110
      Ida Anker
      Participant

      Many thanks for admitting me to the Group. I was diagnosed With IPF in Oct 20. A chock after having trouble with breathing for approx 2-3 years. I’m 61 and located in Norway. I started on OFEV 150 mg a month ago, and have not experienced any side effects yet. First liver status was good aswell. After being in chock for a month I’ve been woriking hard on my thoughts and mental Health, forcing myself to find 3 good Things about life everyeday. Just the small Things such as a beautiful sunset, a Nice Music play or the fact thatI’m still Able to walk without any Heavy breathing. The problem only occurs in steep hills. I’m currently at 70 % lung capacity.  Thanks for sharing all Your thoughts and excperiences – it is of great help. Sorry for any wrong spelling, it is a while ago I used English in my writing.  Take care everyone

      • This reply was modified 10 months ago by Ida Anker.
      • This reply was modified 10 months ago by Ida Anker.
      • #27113
        Mark Koziol
        Participant

        Hello Ida, thank you for sharing. It sounds like you are faring well mentally and tolerating the Ofev medication. I love your outlook on life; finding 3 good things about life everyday. This is a positive way to look at things in your life. I’m sure this helps your total wellbeing. Thank you again for joining and participating in our forum, Mark.

    • #27132
      Don Kauffman
      Participant

      Hi Mark,  Thank you for your welcoming message  when I  signed up for the forum.   I was finally, and I feel correctly, diagnosed in November with IPF .After nearly 2 years of seeing one Doctor after another, and hearing several possible diagnosis of what it could be , I was steered to a pulmonary surgeon at the Gundersen Health System in La Crosse, Wisconsin. She was straight forward, no guessing, this is what you have . If you do nothing, this is about how long you have,this is what you have , and…tell your family.

      Not that I have to be hit alongside the head with a  2×4, but she had my full attention!  Thanks to this website,I finally got my 1st shipment of OFEV in January of this year .The 1st day was spent paying homage at the porcelain throne.When my wife came home from work, she set me up with a better  protein diet and schedule for the meds(and the BRAT diet). I have not noticed any improvement yet, nor do I expect this soon,but having adhered to the Covid  restrictions and with the cold, snowy winters in Wisconsin, I had to find an outlet to prevent the self pity I felt sneaking in.  I found a small town clinic(Sparta, Wis.) that still was offering a pulmonary Rehab. They allow me in 2 times a week and and though they suggest the right equipment, they are not pushy. They maintain a standard of cleanliness (and distance) that really impressed me.

      With 79 right around the corner, I don’t know what the future holds, But I found so much support in your tag:  KEEP THE FAITH !                                           Thanks Mark,             Don Kauffman

       

      • #27134
        Mark Koziol
        Participant

        Hello Don, thank you for sharing your story. You definitely have the right attitude. I hope you become tolerant of the Ofev. For some it takes a little while longer. Stay active as you can. I’m glad you found a pulmonary rehab facility. If they have leg equipment to build muscle, please take advantage of it. The stronger your legs are the better off you will be. Please stay in contact and feel free to comment any time. Breathe easy my friend, Mark.

    • #27181
      Mark Bowden
      Participant

      Hello, Mark K – any insight/ personal experience on when side effects of OFEV commence ? I am finishing my first week on 150 mg. I have read the literature, perhaps too much, as I am Very anxious about this medicine, coming off the starting blocks. Thank you. Mark B

      • #27184
        Mark Koziol
        Participant

        Hi Mark B., most patients who have severe gastric problems usually have right from the beginning. It sounds like you haven’t had any problems tolerating the medication so far. I had periodic problems. About every two – three weeks I would have a day where it wasn’t safe to leave the house. If you do experience a problem immediately go to the BRAT diet. Make sure you get some protein in your meals too. I do believe small meals will facilitate a better experience. Try not to be anxious about this, everyone is different. Keep us updated on how it’s going. Have a great Super Bowl Sunday! Mark

    • #29194
      Pat McD
      Participant

      Hi Group:

      I was diagnosed on 77  BD in March and have taken OFEV 150×2 beginning July for over one full week.
      Naseau on and off started Day 2 with two bouts of diarrhea and stomach gripping.  Fatigue is present.
      Watching my diet closely I find fish and eggs for protein, cooked oatmeal, vegetables and pineapple with apples to be my most effective foods to reduce after effects. The BRAT saved me one day.
      I am currently able to walk a mile  a day with four brief rest breaks to keep oxy in 90s. This makes me feel much better and is so much better than my 12 steps after Covid and before diagnosis.
      I have access to a fitness room and physical therapy which has followed since Covid in summer of 2020. This exercise even briefly is a blessing.
      Coughing in bouts happens in night on an elevated bed. I am taking zertex, musinex caplet  and honey cough drops along with an Abuterol inhaler 4-6 hrs. In between I get about three hrs of good sleep and then do that again. I think this is my new normal; it was multiplied in Covid so in some ways this is a relief.
      In no way do I have control of this disease; but I am hopeful with OFEV to be able to hold a first great grand baby, and travel some with my spouse who remains in retirement  with part time ministry work.
      if you read this and have suggestions in any area please note. I am so thankful to be able to read on the forums about your experiences  and to now feel not alone here.

      Pat

    • #29213
      John Klinkosh
      Participant

      Hello, I’ve been diagnosed with IPF Nov., 2017 and went on OFEV around March 2018, I had no side effects for the first 6 months and then I did get some diarrhea and stomach problems. But I still take 150 mg twice a day, sure there are some bad days but I can get through them. I did have some very bad stomach problems at one time and I stopped the OFEV for 4 days and started back up and I do watch the 12 hour separation between pills which helps very much. My last X-ray I had my doctor said there wasn’t any change, so it seems that the OFEV is working good. Hopefully they will find a cure in the future as I’m not looking forward to the progression. I have come to not feeling sorry about having IPF as I feel there are other diseases which are much worse and we all have to play the hand which has been dealt to us.Watch what you eat, try to get your exercise in. Check out Bill Vick who heads PF Warriors out of Texas, he was my inspiration to loose weight and exercise which I believe has helped me greatly dealing with IPF.

    • #29230
      Lorraine Tracey
      Participant

      Hello All,

      What a wonderful thread this was. I noticed it was from months ago, but it just turned up in my email, and I’m new to the group. Glad to see that Ofev can be used long term. I started on Esbriet, but I was so very sick from it-nausea, diarrhea, dizziness, and sun poisoning, even being very cautious. My Dr. switched me to Ofev 150, but although not as bad, the side effects were troublesome. I am now on Ofev 100, and if I maintain the 12 hr intervals and eat properly it’s manageable. It has caused an increase in blood pressure so I’m on medication, and I have now pulmonary hypertension. I take advantage of the Ofev Open Door program for support and I do ask questions of the nurses and pharmacist from the specialty pharmacy that I get my medication from. I also take “medication vacations” Dr. approved, not often, but sometime I just need a break. Ofev is working for me, my PFT’s are remaining stable. I notice subtle changes in the way I feel and I’m so much more fatigued, and have good and bad days, but as another member posted, I feel thankful, things could be so much worse.

      Lorraine

    • #29232
      Clarence
      Participant

      That is good news,I had a lot of problems with 150mg had to switch to 100mg. Nurse told me to take metamucil,I was wondering how that would work,but it seems to work well.bulks it up well. Just had a breathing test waiting to speak with my Doctor.Seem to be loosing some of my computer skills since turned 80.

    • #29325
      gaston
      Participant

      Comencé mi tratamiento con OFEV en julio de 2020 (2 dosis de 150mg) y tuve que parar en diciembre de 2020 debido a los efectos de la diarrea y los indicadores de función hepática fuera de control.
      En marzo de 2021 reinicié mi tratamiento pero solo con una dosis de 150mg y lo he estado haciendo bien hasta la fecha, con algunos efectos pero tolerables.
      Mi pregunta es si estoy perdiendo mucho tiempo en esto y quiero saber si alguien tiene una experiencia similar.

    • #29346
      John Garner
      Participant

      Hello Everyone, I asked this question a couple of months ago but I never got an answer. I want to ask it one more time. Perhaps no answer is my answer. Anyway, has anyone ever gotten over IPF or greatly improved?

      I am a Christian with a strong faith in God. A few months ago I was prayed for a at church service. Nothing spectacular happened but I started feeling better. I told my pulmonologist what I just told and ask him if he could give me another breathing test. He gave me one a few days later and the nurse said my test was better than the one I had last October but my doctor would talk to me. A few days later he told me the results. Here is what he said:
      “Hi John: we have been measuring 2 things: 1. How much air can you breathe in and out and 2. How well do you exchange oxygen.
      In October, your lung capacity was 3.16 liters. Now it is 3.58 liters. The measure of oxygen exchange has gone from 45 to 52%. There can be small differences with repeated measurements but not this much. Does this help?”

      So, I’m interested if anyone has ever gotten over IPF. Thank you.

      • This reply was modified 4 months ago by Christie. Reason: formatting visible
      • #29364
        Diane Beck
        Participant

        I am so happy for you.  We are Christians and my husband has been prayed over.  I had another lady I met through a group who wanted to pray over him at a church but Covid was surging and he did not feel comfortable going.  I keep asking God to heal my husband of this.  He was diagnosed , I believe Dec. of 2016.  They misdiagnosed him and I asked him to please go get a 2nd opinion.  He had a lung biopsy and the surgeon stated it came back negative.  We were jumping up and down crying, so happy….they sent it to another lab because they kept insisting he had IPF.  The other lab stated he did have it.  So disappointing and devastating. He did have a visit where his number improved and the Dr. was pretty surprised.  I do not remember what numbers it were that improved but he had lost weight and had been exercising.  Nobody ever recommended he go on OFEV. I even believe his Dr. played a role in the medication. Last July I could tell he had gotten worse.  Back to the Dr. who is always wanting CT scans which really make me nervous..People say this Dr. is world renowned for IPF. Im not going to mention name or anything.  Anyway since last July he struggles with getting short of breath.  Before that he was climbing mountains with our kids. They put him on OFEV a yr. ago.  He has done fine on  it.  He takes it very religiously at 6 and 6 and eats a lot of protein with it.  He goes to a Chinese buffet and gets a week worth of food and has it for breakfast every a.m….lots of Mongolian beef, general Tso’s etc.  I get nervous because he seems to get winded very easily now and still has 7 yrs. to go before retirement.  We still have a teen at home. I am confused why they had him wait to take OFEV til he was way worse and had shortness of breath. He just found a guy at work who had a lung transplant and has survived 12 yrs. already and another guy at work with IPF.  He has been so alone with this and I am hoping he reaches out and has someone to talk to. I pray God continues to heal your lungs.  Please keep me updated.

    • #29353
      Ben Robinson
      Participant

      I dropped down to 100 mg OFEV and have zero side effects now after a three month pause between the 150 and 100 then started the 100 a while back.

    • #29881
      Joy Hoffmann
      Participant

      This web site is great for people to vent.
      I was diagnosed with IPf in April of 2020. My doctor immediately  prescribed OFEV. So Fay the diseases has not progressed. I walk everyday .Eat a high healthy diet.And the real positive is that I just started an 8 week PF rehab program. I have always been active and healthy so this shortness of breath was disturbing.I was immediately sent to  pulmonologist and was diagnosed wit IPF,.That Velcro sound in the lungs.My sister died from this disease in 2014 before OFEV. So I feel very fortunate .I am 83 years old But I am fortunate to have really good genes.I do eat small portions many times a day.I also drink plenty of water.My BP which has always been high is at the normal range now.I tolerate the OFEV very well. And I have last 18 pounds which I needed to do.So all in all my life is pretty good.Thank you all for your  comments. Always helps to know we are not alone.I live on the East coast which has very  humid weather.The biggest change I notice is a low tolerance for heat.I visit my family out West and the dry air is more comfortable.I have been married twice and gone through Alzheimer’s with my first husband and cancer with my second husband so Life us not easy for many and I feel lucky to have had a long life.I have 3 children 11 grandchildren and 8 great grandchildren. My sadness is for those who suffer from IPF and are so young.My thoughts are with you  .Try to keep busy and positive and keep exercising as much as possible.

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