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    • #26883
      Renee
      Participant
      • Newbie here. Just
      • started taking Ofev. So far l have been blessed and the side effects have been very few.  A few headaches and fatigue.  I have only been on it for 8 days, it still has time to hit with a vengeance 😜, but praying it wont.
    • #26884

      Hi Renee,

      I’m so glad to hear this, I’ll keep my fingers crossed that the side effects don’t arise for you. That would indeed be a blessing. Take good care and welcome to your PF forums — this community sure is a great and supportive one.
      Stay well,
      Charlene.

    • #26887
      Dana Kelley
      Participant

      Hi all, well, this is my 3rd day on OFEV 150mg. After reading so much about the diet you must watch, I’m hopeful I can do it. (I love to eat). Just hate reading on the internet that we only have 3-5 yrs to live. My doctor straightened me out on that. I refuse to let this stuff ruin my life, after reading a lot of threads on here I see it is possible to live a normal life, other than climbing mountains (and that’s not normal) ha. I’m exercising, walking, yard work and my husband and I are RVers. I am his caregiver, he has slight dementia, insulin diabetic and has 3 small strokes in 2020. He’s doing real good so we are still going to travel. I’m not on oxygen, my stage is mild/moderate dr said. I’ve had difficulty breathing for 7-8 yrs, now I’ve been diagnosed. I’m hopeful the OFEV can slow the progression. I love my pulmonologist and feel he’s going to watch me closely. We’re going to live hard, until we die! I’m still searching the site to gather all info. Thank you all for shearing. Looking forward to seeing good results on here about OFEV.
      (I’m 69 and hubby 70).

      • #26905
        Mark Koziol
        Participant

        Hello Dana, thank you for sharing. You have a great attitude. I hope the first couple days of Ofev have treated you right. I hope you find everything you need when navigating our site. You always have the option to post a topic to ask a question or share an experience. Keep living your life. Take care, Mark.

      • #27143
        Jackie Kalina
        Participant

        Let me know how you do. Jackie

    • #26908
      Troy m collins
      Participant

      New to OFEV(day4) 150mg 2x a day. Also on 4ml oxygen 24/7. Just a brief history before my question. Diagnosed with persistent Afib about 5 years ago that eventually resulted in pacemaker(3 lead) an a/v ablation. Original thought was this my cause for shortness of breath. Cardiovascular says no sent to pulmonologist after high res ct scan showed the lung disease along with slight emphysema in right lung. Great pulmonologist confirmed ild. My question is did the heart problem make the lung problem worse. Also have chronic heart failure. Still as active as I can be.

    • #26928
      Ben Robinson
      Participant

      I took it for three months with protein and carb perfect diet and was fine. Then the acidy type of effect hit my lower GI with various unpleasant affects   So I had to stop and now i am stable after 4-6 weeks being off of it. So it was apparently the cause of my stomach issues. If I start again I will try the 100 mg dose. However I may have halted the root cause autoimmune activity with CellCept Ofev and disease cycle from years 4.5 to now 6. So it may not be needed anymore for me as I seem to be healing with monthly prednisone bursts as the catalyst to unbind the softening fibrosis and stretch the lung back out. The healing has however exposed some damaged lung causing some issues we are working on.  I found it odd that OFEV hit me so suddenly with acidy loose stool and excessive gas at the 3 month mark. Boom. It was bad enough that it was intolerable  That’s my experience anyway. I know OFEV is supported by many people including my doctor with successful trials to slow fibrosis particularly for IPF patients which I am slightly different than. So don’t let me discourage your use of the drug. I do have a nationally heralded doctor  I consult with who says it doesn’t do anything from what he sees.  But  I tried it because it is said to specialize in targeting SSC autoimmune activity which I am similar to. I also started eating probiotic high quality yogurt in those quick easy little tubs to stabilize my stomach and may unpause the use of OfEv to start again at 100 mg after my colonoscopy if I notice any disease activity developing again. I hope this helps.  I like all feedback and related experiences myself gained in this forum.

    • #26935
      Mark Koziol
      Participant

      Hello Ben, thank you for sharing. You have a wealth of experience. I find your comments helpful as I am sure the members do as well. Good luck with your colonoscopy. I hope everything is normal. Take care, Mark

    • #26946
      Carol Rubin
      Participant

      Hello all. I’ve been on 100mg OFEV for 2 weeks now and have had no side effects. I also just got my first COVID vaccine and only suffered a sore arm for 2 days. I was wondering do people who have had no side effects on 100mg frequently get side effects on 150mg? I’ll be upping my dose after the first month. Thanks for any comments. Carol

      • This reply was modified 10 months, 1 week ago by Carol Rubin.
      • #27142
        Jackie Kalina
        Participant

        I was doing OK on 100 mg 2x a day. My diarrhea was manageable. was a bit queasy and all the rest.
        Was on 100 mg for two months, so I “thought” I was adjusted. Everyone is SO different. After a few months of 150 mg, I find it intolerable. I am 80 years old and have been in the best of health. Nothing, no stitches, broken bones, except I had IBS and GERD which may have something to do with IPF. The point I am “trying” to make, is I am not a good patient. Making myself sick everyday is not working for me. It will be a year in April that I was diagnosed, and I am not on oxygen, nor do I have a cough. The meds literally make me sick. Tomorrow, I see doctor and will go back to 100 mg. For the benefits, I could live with the consequences though my doctor said the study was done with 150 mg 2x a day. It is a risk I am willing to take. I wish you the best as so many seem to do well on max. Please keep in touch, Jackie

        • #27149

          I’m so sorry to hear of the struggles you’re having with Ofev (150mg), Jackie! This can be a really difficult drug, and sometimes we need to have those tough conversations with our doctors about quality of life vs. medication side effects. I hope your physician was open to you going back to 100mg if that’s where you can tolerate it best. It sounds like your IPF is slow progressing, so I’ll keep my fingers crossed that you remain free of 02 and the cough. Wishing you the best, and stay safe!
          Charlene.

    • #27000
      Alan Jones
      Participant

      Had to stop taking ofev because of high BP.

      Alan

    • #27229
      Joe Meyer
      Participant

      I’m new to this forum. Actually it is my first forum ever.

      I was curious to read the topics on the two medications my doctor would like me to consider – Opev or Esbriet. I haven’t researched the data on the drug studies but I’m not seeing anyone here who has spoken about how much it has helped slowing down their lung fibrosis.  My inclination is to decline either of these drugs based on side effects. Looking for input. Thank you very much.

      • #27277

        @juliebug

        Hi Joe,

        Welcome to the PF forums. I’m glad you found us and hope you find this site helpful. There are a lot of wonderful people on here who are willing to share their stories, answer questions, etc.

        Regarding Ofev and Esbriet, there are a lot of discussions on this site about these two drugs and personal stories of patients using them. You can go to the main page (https://pulmonaryfibrosisnews.com/forums/) and on the top right-hand size of the page you’ll see a “Search Forums” text box. If you type in what you’re looking for, a lot of information will appear, especially about Ofev or Esbriet. There have been a few people who’ve mentioned these drugs as helpful to stabilize or slow down their fibrosis (not reverse, they can’t do that) but their experiences might be of interest to you. I hope that helps, feel free to write anytime.

        Char.

    • #27236
      Jacki Baum
      Participant

      I was diagnosed with IPF in April, 2017 and began taking OFEV several months later,  I started on 150mg twice daily, but after 6 month, the side effects were severe enough that the doctors agreed to reduce the dose to 100mg/twice daily.  I have been doing well, minor side effects, and my disease has not progressed.  My PFT and 6 minute walk remain consistent, I get tested every 3 months.  I walk, play golf and do a lot of volunteer work.   I would encourage anyone to try OFEV, if 150mg doesn’t work, try 100mg.  This is a tough disease, and we all have to decide what is best for us.

    • #27276

      I’ve had a very similar course as you Jacki, especially with the Ofev and having to go down to 100 mg vs. 150/mg. Glad you’re tolerating it well and that you can continue to do the things you enjoy. Thanks for sharing 🙂

    • #27307
      Cheryl thomas
      Participant

      Hello everyone. I love these forums because they are so informative. I have a research pulmonologist at the University of Pittsburgh. He does not want me to take one of the meds because he said “you are not sick now and these will make you sick”. I have had IPF since 2016 and still very active. No cough or SOB. I know this can change at any time. Next month I will hopefully qualify for a clinical trial at the University. It is an IV that I will receive monthly. I also have a history of IBS and GERD. I think that could be my predisposing factor. I will keep fighting this deadly disease. I am only 66 and have much I want to do.

      • #27308
        Mark Koziol
        Participant

        Hi Cheryl, because of your IBS I can understand his thought process. Ofev can be be hard on your digestive system. Keep active and if you are on oxygen, please wear it. Having no cough or SOB is great. Keep us informed about the clinical trial. I hope you qualify and you get the actual medicine and not the placebo. Have a great breathing day! Mark

    • #27311
      Libby Fisher
      Participant

      Hello everyone on Ofev.   I really appreciate being able to read others’ experiences with this very difficult drug.  I started on it last April at 100 mg, then progressed to 150 which I was able to tolerate for about 4 months…only because I took occasional time off to give my digestive system a chance to heal .  But it really never got any easier.  I was taking so many supplements to try to deal with the nausea and diarrhea and acid issues …probiotics, ginger, fiber, anti-nausea homeopathic pellets. Nothing really helped and then I ran into a lot of GI trouble because of taking the Immodium and had to consult with a gastroenterologist. Sorry for the gucky info but we’re all in this together… I never realized that the Immodium was actually causing a lot of stool backup because I was still having diarrhea, so I kept taking more Immodium thinking I’d solve the problem.  It really made a mess of my system!  And then the blood pressure issues started…crazy fluctuations and I have never had high BP.  When I had my checkup in mid-November,  my lung function tests were really excellent (I’ve been doing a lot of exercise biking and power walking)…My pulmonologist said I could try 6 months being off the Ofev altogether.   The 3-5 months I was on the drug definitely helped me recover from months of bronchitis… has anyone posed the question (which I will do when I go back in May) that maybe in milder cases like mine where my oxygen level is fine…could some patients take Ofev for 3-4 months per year, and reap the benefits and then go off it for the rest of the year?

      Oh how I wish the clinical trials in the nosespray or inhaler version of a drug would progress rapidly!!!

      I’m going to try the honey,ginger,thyme mix because it sounds like it might help with wintertime phlegm and coughing.  Thank you everyone for your input!!

      Libby

    • #27319
      Sunder Raman
      Participant

      Hello everybody.  My name is Sunder.  I have been on Ofer 150mg dose taking twice a day with protein-rich meals.  I have had very manageable side effects.  I am moving my bowels 8 times a day.  It has not bothered me much.  Feels like it has helped with my shortness of breadth.  The key to taking Ofev seems to be taking it immediately after high-protein meals.  This helps with stomach and bowel queasiness.

      As a background, I was diagnosed with a form of ILD that called ‘Hypersensitivity Pneumonitis’, Not IPF.  Although Hypersensitivity Pneumonitis is considered less severe than IPF, it is only little less fatal.

      I would like to connect with anybody on this forum diagnosed with ‘Hypersensivity Pneumonitis’.

      sunder

      • This reply was modified 9 months, 2 weeks ago by Sunder Raman.
    • #27387
      JT
      Participant

      Hello all. I have been reading the forums since diagnosis of IPF last March following a bout with flu and pneumonia. Very few symptoms before diagnosis other than weakness and inability to do much aerobic and strength exercising, which I assumed was due to worsening spinal osteoarthritis and scoliosis. I am 66, female, and have a few other inflammatory conditions but nothing life threatening until now. I’ve only posted one short note here in the past. I have been reading all the posts from others, however, and so appreciate all the information and experiences.

      I started taking 150 ml of Ofev in late March and was very worried about GI distress. I have been a type 2 diabetic for about 10 years (not overweight, no family history, good diet) and taking Metformin which always caused diarrhea. I had reduced my A1C enough that I was taking very little and my doctors agreed that I could stop the Metformin so as not to make the possible reaction to Ofev even worse.  I thought I was really doing well with no side effects until about 8 weeks in. Then it all hit-the constant diarrhea, stomach cramping, gas, bloating, nausea, GERD, dizziness, pain on one side of my head.  After a couple of weeks, I had to stop for one day and do a reset. That helped but not enough. Pulmonologist had me discontinue Ofev for 5 days to make sure that was the problem. What pleasant days those were!

      So I have been taking 100 mg for several months now. Similar problems at first but now I feel like I have learned what works for me. I take one Immodium gelcap before a small breakfast as a prophylactic measure. I also take a lactaid if there is any dairy at all in my food. My lactose intolerance has gotten worse. I can no longer eat eggs either as they make me feel nauseated. No fish of any kind. No more spicy stuff. I do miss many Asian and Mexican foods and seafood. Salt burns my tongue and lips so not as much snacking stuff. I’ve never been a fan of sweets but now I can only taste sweet sometimes. I have lost much of my tasting ability. Oddly, I can still smell everything well. At lunch I have a larger meal, take my other meds for blood pressure, minor heart issue and add a GasX pill. I take a Prilosec 3 or 4 days of the week but try to avoid daily use. If I think I might have something greasy or spicier than usual I take a cimetidine to avoid the heartburn. I have problems if I overeat so I eat a smaller meal in the evening than I used to. I have lost about 5 pounds, which is OK although my doctor tells me he thinks I am underweight. I have a couple of days a week with some GI problems but nothing as bad as it once was.
      My pulmonary function tests have remained about the same as they were last April and even improved a bit. I am still prone to violent coughing if I do even a bit of exercise or exert myself on chores so a fitness routine is almost non existent. That is very discouraging but I keep trying to do very short episodes of strength training.

      • This reply was modified 9 months, 1 week ago by Charlene Marshall. Reason: formatting to remove code
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