October 14, 2020 at 2:36 pm #25822
Would like to know if the side effects from taking OFEV subside or lessen in the long term. I am on 150mg twice a day . I seem to have the diarrhea somewhat under control. Indigestion pain and burning pain in stomach are debilitating. I am struggling with eating too much or not enough with the food to keep side effects at bay. Can not seem to get it right. The stomach pain is getting worse. Feels like GERD as well. Heavy in chest area. My main concern/question is “Is this is as good as it gets?” Or does your body somehow adjust?
Does anyone know if taking smaller amounts is effective or can help lessen the progression of IPF? I am living, but no way feel up to do most things. Very frustrating. Thanks. I am very lucky, I know, as many are prescribed with this disease far younger than myself. I am still in the mild stage, no coughing or oxygen. I am an 80 year old female.
October 14, 2020 at 3:13 pm #25823
Poor you sounds horrible. I was offered but refused to take either of the drugs because of all that I had read about the side effects. and I believe for me far too late anyway, coughing and on oxygen. I do not have IPF but CPFE the non idiopathic form that can be more severe or not, unluckily for me mine is the former. To me personally quality is better than quantity. I am a 74 year old female. and my former job is the cause of my CPFE and yes I have GERD under control now thank goodness.
Goo luck, hope things settle for you and you find the happy medium
October 15, 2020 at 12:38 pm #25824Cindy SearsParticipant
I think over time my abd pains decreased. I think diet is important. To much junk food sets off my stomach. Think of high fiber foods and proteins. Hope this helps you. Give it some time.
October 15, 2020 at 3:07 pm #25828Rachel NoreneParticipant
Hello Jackie — I can well understand what you are going through, as I watch my husband suffer terribly as a result of the OFEV — he has IPF and Emphysema, he was diagnosed 4.5 years ago currently age 66 , but at the same time because of OFEV we believe he obtained all this extra time, and feel so very fortunate now he only needs oxygen when flying or if we were to go to over 2,000 altitude
He started OFEV about 3 years ago, and when symptoms got too bad he cut bad the medication to only 150 mg once a day— and on two occasions he stopped it for a solid week to give his system a break (that helped enormously) — we truly believe his stop in his numerical decline of PFTs pulmonary function tests are a direct result of the OFEV, he is doing really well with his breathing and no oxygen yet.
Then 1.5 year ago, he discovered that a chilled probiotic helped him, we experimented with several and the best for him is the Bio-K + he prefers the fermented rice one, to stay away from dairy — but even on the Bio-K+ probiotic, he has some gastro issues, but nothing like before — definitely the foods that seem to aggravate him is fried foods, fatty meats, poached eggs (but not fully cooked eggs) , and dairy
hoping a chilled liquid probiotic (not pill form) will help you too, and also give yourself permission to take a break by either doing only half dosage or take a break to give your body a rest, it helped my husband both physically and emotionally to take the break in OFEV for a week or so…….take care, Sandi
October 15, 2020 at 9:22 pm #25836George A RydbergParticipant
I have been taking the same amount as you. I take an Imodium with each pill. I also take a chewable Pepto if my stomach talks to me. I can’t handle much fiber so I stay with canned fruit and veggies, no salads. One of the earlier posts suggests protein with each pill. I find just eating anything helps. Yes, sometimes I get diarrhea, but not bad usually. I was doing Keto diet, but that didn’t set well so now I eat carbs and small amounts of protein. I did have an adjustment period, but it was only maybe two weeks. The drug has totally stopped the progression of the disease since spring of 2016. I am at about 60% of normal and have stayed there since 2016. I am happy. I wear oxygen while I’m home but don’t normally use it when out and about. I do limit walking when I go someplace. I continue to believe I am living a great life just different one than most people. Good luck.
- This reply was modified 1 year, 3 months ago by Charlene Marshall. Reason: tagging
October 18, 2020 at 11:27 am #25844Edward GrantParticipant
My husband just switched from Esbriet to OFEV. He had the stomach pain with the Esbriet and now experiencing it with OFEV. Rachel mentioned something about taking the Bio-K + probiotic. Right now Ed is taking another nondairy probiotic drink. Our questions are how much should he take, should he take it everyday and should he take it with the OFEV? Also does anyone know of a good way to eat, drink water or take pills without the terrible coughing starting? Thanks for your help and input. We have learned so much about this disease just by being a part of this support group.
October 18, 2020 at 3:37 pm #25847
Hi @edot ,
Thanks for writing – these anti-fibrotic therapies can be so tough to deal with in terms of side effects, so sorry your husband is struggling with them too. What kind of stomach pain is he experiencing? If GI-related, I found going down on the OFEV from 150 mg to 100mg then slowly going back up to the ideal dose really helped me. Unfortunately I had to do this a few times before my system tolerated it. Or is it nausea he is experiencing? Having something to coat the stomach usually helps , and I’ve found smaller meals more often throughout the day (5-6) a lot more comfortable on my digestive system than 3 larger meals. I sometimes take a liquid stomach coater to help if I am feeling unwell too, because I know it’s necessary to eat. I don’t deal with the coughing while eating so I don’t have too much personal experience to share with that. Would softer food, like smoothies or soups, make the chewing less and thus reducing cough a little bit?
Has anyone else had to deal with chronic coughing will eating/drinking and if so, what did you do to supress that?
October 19, 2020 at 6:24 pm #25856Edward GrantParticipant
Thank you for your input. We appreciate the help. Ed’s pulmonologist just put him on the 100mg instead of the 150mg. His main issue from the OFEV is the stomach pain. He is on 2ml oxygen, takes pentoprazole for GERD and 5mg prednisone. We have also found that taking small bites when eating ,careful swallowing, and no talking helps a little with the coughing at meals. My husband says that works because I do all the talking anyway. Thank you again.
October 20, 2020 at 10:39 am #25857Brian SowterParticipant
Dear Jackie ond other participants. Thank you for your posts.
I have also reduced my Ofev to 100 mg x2 per day and it helps but I am still finding it a problem. I discontinued the Ofev for a week or so on two occasions and felt much better so I am sure it is the cause of my digestive problems.
I am currently experimenting with the following: I take 1 mg ( half a tablet) of loperamide per day and a laxative every few days as required. I know this may seem odd but several doctors have assured me it is ok as the mechanisms are quite different. I find the loperamide seems to slow things down and it helps a lot if I avoid getting constipated which has always been a problem with me. I have never had diarrhea but pass a lot of clear mucus and wind when taking Ofev. I like to eat a lot of vegitables and fruit and am not keen on doing a restricted diet even if I knew what it might be. Things are a little better with the above but I am going to try increasing the Loperamide to 2 mg (1 capsule) per day
Very interesting to read that others have tried taking a ProBiotic support. I read that Ofev and other Tyrosine Kinase Inhibitors upset the gastric Microbiome. I will try this out.
I also have very severe GERD an this is treated with a mega dose of Pantoprazole (40 mg x2 per day), A swig of Peptac at night and I sleep on my left side with my shoulders elevated. I still have to cough/throat clear in the morning.
It would be nice to have more energy but life is good!
October 20, 2020 at 3:00 pm #25860Patricia FoxParticipant
I started on Esbriet when I was first diagnosed 2 years ago. I had horrible side effects – constant diarrhea and lost about 40 lbs – not good. I stopped for a while then my pulmonologist suggested I try OFEV. I have been on that for almost a year. I started with 150mg/2x/daily and continued to have severe diarrhea and continued to lose weight. For the last several months I am taking 100 mg/1x/daily and still have some diarrhea but not as bad as in the past. The problem is that there is no evidence that the 100 mg/1x/daily has any significant impact to slowing the progression of IPF.
Additionally whether due to the OFEV or the IPF I have a lack of appetite so have to be very diligent about eating small amounts throughout the day.
October 20, 2020 at 3:48 pm #25862
Thank you for your reply. Am I the only one hoping the doctors are wrong or they say I have been cured? I just can’t believe this has happened. Magical thinking? The more I know, the better. Jackie
October 20, 2020 at 3:53 pm #25863
Thanks for your input. It helps. Just not not feeling alone and that others are lasting a few years is good news. My first doctor was so cold and so matter of fact. Three to 5 years to live. No Hope. A change of doctors has helped me and he got me on meds immediately. At my age I can’t hope for too much, but having been given an end date, was hard to deal with. I have adjusted to that too. Stay strong, Jackie
October 22, 2020 at 3:05 pm #25887Bruce HawnParticipant
I am a 60 year old and recently switched from Esbriet to OFEV, had horrible skin issues with Esbriet. I was extremely nervous about OFEV because my Esbriet welcome package contained a bottle of sunscreen, and that didn’t work out so well for me. OFEV’s welcome kit with Imodium did scare me. In talking to the various people with OFEV, they all stressed that the most important thing is to try to take the doses as close as possible to 12 hours apart and to skip if you miss by more than an hour. (double check with your doctor before you skip). I asked the educator provided about how much to eat and he told me a story of someone that had issues and when asked what they ate with last dose, the answer was half a cookie. Has to be more than that. I have been very strict on taking OFEV as close to 12 hours apart as I can manage; and taking the OFEV midway through my meal. I have had a fair amount of success. Do get some diarrhea, but it has been tolerable. I get it when I push my rule of taking my dose no more than 1 hour from the 12 hours of my last dose. I am sure you were told about the 12 hour rule to help minimize side effects, but am sending this in case you missed it.
October 22, 2020 at 3:30 pm #25891
Thanks your answer confirmed for me that I would be absolutely useless taking either of the tablets, I cannot for the life of me be so precise about taking tablets. Always forget the evening dose of anything until hours after it should have been taken.
October 28, 2020 at 12:37 pm #25942
Thank you so much for circling back and letting us know how you’re doing. A change in doctor’s or management in your care can literally make such a difference! I’m glad you switched physician’s and were put on medications. Did they put you on Ofev or Esbriet? Please know you’re not alone and that many people on this forum truly know what it is like to live with this disease, and we care about you! You’re welcome to write us and join the discussions any time.
Thinking of you….
October 28, 2020 at 8:45 pm #25947
Thanks for sharing your experience with starting Ofev, and some of the education you were provided! This can be such a tough drug to adjust to (I am on it as well) and the more information people have about it, the better. Definitely helpful to know about skipping a dose where needed if the window of consumption is missed, and I agree with you, definitely more food is needed than half a cookie. Another couple things I found helpful: a) ensuring adequate protein with each meal consumed ahead of the Ofev and b) eating smaller meals throughout the day as opposed to three big ones. That seems to work for me. Thanks for writing 🙂
October 28, 2020 at 8:57 pm #25949
November 9, 2020 at 3:56 pm #26081MarianneParticipant
Hi all –
I have had very few problems since starting on OFEV. I have been on it about 2 years now. I have had a few issues mainly with nausea and sometimes diarrhea. I have found that I must have 12 hours between doses. When I have tried to take them closer together I have had problems. I find that eating a bit of protein with my breakfast and dinner meals helps. When I was diagnosed I was eating a plant based diet. I have gotten away from that but I getting back to it. I feel better on it and have more energy. I also have acid reflux – which comes and goes – so I watch that I don’t eat anything to spicy.
I am not yet on oxygen and my PFT’s are stable right now.
I try to walk 1-2 mile a day outside. Getting back to yoga this week.
November 10, 2020 at 1:03 pm #26086Maka RebagliatiParticipant
Hello – I think your body might adjust somehow, try eating small amounts more often. My husband (74) recently switched from Esbriet to OFEV he is trying to eat something every 3/4 hours. He is experiencing vomiting, has anybody experience this with OFEV? It is not related to what he eats, it just happens.
- This reply was modified 1 year, 2 months ago by Charlene Marshall. Reason: tagging
November 12, 2020 at 9:08 pm #26128
Hi @marianne ,
I also had the unpleasant GI side effects when starting OFEV a few years ago. I actually had to go off it, then slowly titrate back on (100mg to 150 mg 2x daily) twice before I could tolerate it. I also eat 12 hours apart, and ensure I have substantial protein and water with each meal. I also have recently begun not consuming any diary and it seems to have helped. I also use the Imodium sublingual tablets that absorb under the tongue, I find them far more effective when I need relief than the oral tablets!
November 14, 2020 at 2:08 pm #26143MarianneParticipant
Thanks. I too have gone off OFEV for awhile. I went off earlier this year for a couple months. Just found out I qualified to receive OFEV through the BI Cares Foundation. That is a great help with my budget.
I watch the dairy also. I like yogurt and try to eat dairy free yogurt – with almond or coconut milk. Does the imodium sublingual tablets require a prescription or can you over the counter?
November 14, 2020 at 2:58 pm #26147
Imodium melts (sublingual) can be bought over the counter in most countries I should think, definitely here, Europe, and the UK
November 15, 2020 at 9:51 am #26150
Nice to hear from you, I hope you’re having a nice weekend 🙂
The sublingual Imodium tablets can be purchased over the counter here in Canada. They usually just come in a smaller pack of tablets, and are more expensive but for me they’re totally worth it.
So glad you were approved for the BI Cares Foundation grant, that is excellent news! Take good care and keep in touch.
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